Even though she has been able to go places a little here and there. This is getting worse than it has ever been. We just cant wait have to get treatment. She cant sleep hardly eats is never relaxed even when she is having fun. The 1750mg Augmentan cant be given much longer and when she goes to a lower dose it is like she falls off a cliff. Please we need more prayers than ever!! If you can help please do. Our family is at an end here, no better way to word it. We just want our Maddie jo back, we want her to fell human again and not be worried all the time and afraid to or at this point and time be able to live her life like a normal teen. Please help, this should have been done 2 mths ago. But as you all know with normal bills it is hard to stay afloat let alone ten's of thousand's in medical bills added to it. God Bless and thank you all for the prayers and donations for our daughter. Sincerly The Nortons
Maddie jo had an ok day yesterday and we even went to homecoming parade and part of the game, she started getting bad and we came home to a rough night. Today has been good, feel so blessed when she gets a day when the events arent so bad they keep her down constantly. She has had 2 good friends that have stood by her well 1 moved a month ago and now we found out last night the other is also moving away. She is heart broken. Just wish she could get a break you know. We will get the 2nd treatment some how and get her feeling better. Scary right now with cold and flu season coming on, with her immune system so bad she is wide open to everything. A simple cold could send her into, well just bad stuff can happen real fast. But this treatment will boost it up and she is and will still be on 1750mg augm. daily . The anti-biotics are not enough she needs the boost to her blood to be safe and to reach remission. This one will do it I have faith. Either way with out it she will slowly go down hill, the seizure's , regresion and all symptoms will get so much worse. Please keep her in your prayer's and send good thought's and vibe's her way!! PLEASE!!! God Bless and thank you, a very humble father.
Been a monumentally bad couple weeks. She is struggling more than ever, its bad. She has had a couple breaks but not near enough. She is worried about her twin also, so that makes it worse, we go to Motts childrens hospital tomorrow to talk to the Neurosurgeon to find out what all they will be doing when they remove the mass and cut the tethering to Allie's spinal cord. Please say a prayer and keep BOTH girls in your prayers my friends. Lord I know you are with us and will be by our side tomorrow and every day guiding the surgeons and everyone involved's hand-hearts and souls as we prepare for this event. Please also help us to get MJ's next treatment. Thank you so much for you love and blessing's and for holding us tightly to you through this heart breaking year. With out you Lord we could never have come this far. Thank you for all our blessings and for friends and family that have stood by us. In your Holy name-Amen!!
Last night was a bad one. The events came 1 after another with lots of regression. Then this morning 1 of her cats was killed and it sent things even darker than they were. Just want her to get some relief not only from being sick but from worrying about her sisters surgery, school and now losing her beloved cat. Lord I know you are there and working on a cure and watching over our family. Please let this be the last tramatic event above and beyond PANDAS. Please. Thank you Lord for never leaving our side and caring us when we are overcome. Amen! Thank you my friends for your support and prayers also!
To see your healthy outgoing child go to a home bound scared shell of her self, from the fears of people staring at her if she has a event or has regression to having no life or friends to speak of is the most heart breaking thing as a parent or a sibling. Just when we think we just cant take anymore the Lord answers prayers and she gets to go out side or desides she will take a chance and go to a movie. Things that to us seem so normal and a ''given'' that we can do them anytime. But to her are so few and far between. This is a demon in my eyes that has taken her over but I know with all the prayers she recieves it will be cast out! Even more proof is friends most of whom I have not seen or talked to in over 3 decade's that come and take on the fight. They lighten the load (so to speak) on our shoulders enough for us to re-fuel and get back to speed with out feeling defeated every second of every day. This has taken away my daughter her twin , older sister and my wife and I life. It has been all consuming in so many ways. The description of it dosent even scratch the surface of how bad or how much this takes away from a child. Remember make that call to your states rep and tell them PANDAS and PANS needs to be recognized. No child should have to fight for a normal life, NO CHILD! To my friends whom are brothers and sisters to us we in as humble way as possible say thank you and God Bless you all. Please keep the twins in your prayers. Allies appointment with MOTTS is the 1st and we will sched surgery then and for Maddie jo we ask that she can also get her life back and return to school and not be afraid of going out in public and be event free and have a strong immune system again!
PLEASE NOTE THE AMOUNT ABOVE INCLUDES MONEY ALREADY SPENT FOR FIRST TREATMENT . WE ARE WORKING ON OVERDUE 2ND TREATMENT NOW . BALANCE FOR GOFUND ME IS ONLY $ 2,700.00. The 1st one cost $13777.77 (per her wieght at the time.) and $2400.00 Doctor fee that day plus $2000.00 in Doctors appt. before and $500.00 phone consol after and $500,00 follow up. Which is $19,177.00 plus meds, and cost to go to Chicago ( where her doctor is)to be nice Ill say. $140.00 gas. Food and hotel for the 4 days ( 2 day treatment) had to go day before for appointment and left on 4th day then follow up a couple mths ago for 2 days was (combined both trips together)over $800.00 and we didnt eat out alot we took food and drinks from home. About $20,117.00 cost. And that was being conservative on what we did and where we stayed. With out food and lodging we were at @ $19,317.00 So at most you could say we should have $2728.00 for 2nd treatment which leaves us $16449.00 short with out medication for her to bring home or food to eat and a place to stay. So please dont think oh they have enough. Yes we were blessed enough to get 1st one done but 2nd one is also needed and my insurance through GM hasnt kicked in yet. Your hire in date changes as you go from temp to flex and then when hired in so my hire date has changed 3 times all later than the 1st. Also they wont say if they will cover until im on, we just have heard BCBS will cover it. Thank you for all your help and we are saving as much as we can but the brutal and honest truth is we fell way behind after Maddie jo became ill trying to find out what was wrong (hospital stays ,test etc...) I couldnt work I had to stay home 24/7 to take care of her ( I am a former EMS provider and was logical one) so we lost an income and every thing else besides our home, Thank God we were able to keep it. But I am still part time nights and it is hard to save when you get tens of thousands behind due to med cost and losing an income.All money is to help Maddie jo in her fight to be a healthy normal child again. Please continue the prayers for both girls Mott's Childrens hospital is doing Allie's surgery for the mass and the teathering to he spinal cord. It IS covered by our insurance ''Praise be to God!'' But they sure could use all the prayers and good vibes you could send their way. Thank you agisn and God Bless!!! Sincerly, The Norton Family.
Spent all day the other day in ER. She needs this next tratment now but we just can make it happen. She had a good day yesterday and for the 1st time in a long time we played outside. What a blessing! The illness is overcoming her so greatly now, it is so heart breaking to see her confined to a life of nothing! the 22,045. above includes the money from first treatment that she has had. we are at 2,245.00 twoard next one plus @ 3k in bank. I wish I could reset this so it reflected the true amount with out starting a new account an losing followers. Please continue to pray for Maddie jo. She lives everyday in fear and pain. She just wants to be like everyother child who can live a normal life and go to school play sports again and drive like her twin sister can. Thats not asking for much at all is it. Thank you all for your support!! God Bless, The Norton family.
Asking for alot of prayers tonight, she has been getting progresivley worse for over a week now and today the 1 sign the doctors told us to watch for more than any has showed up. Please I beg you all for prayers tonight for my little girl. She needs them now more than ever before! Please Please say a prayer for God to lay his hands on her, it dose not need to be for a cure just for her to be better. I beg you all just 1 prayer!!!!
Last few days have been horrible, she is having almost constant events. So hard to go to work when she is like this but we need the money to survive. It has been 1 year ago today since this inhuman disease took over all our lives. We went from a family doing great. Money was good school was good I was all set to retire at 55 and my wife would be 50. We had everything all worked out, girls would be in college, house taken care of we would sit back and watch grand son and take it easy finally. Then in a blink of an eye all of that was gone. Maddie cant go to school because her imunie system is so weak, Allie has to have surgery to have mass removed from the base of her skull. Insurance wont cover any of Maddie's medical issues I closed the shop to take care of her Steph took fmla days and before we knew it everything had changed. Now we struggle to even keep our house and pay minimal bil's . With insurance not helping the bill's are.....well just mounting each treatment at 20k plus and not adding everthing else. We watch our daughter's suffer eveyday and in Maddie jo's case cant do a dam thing about it. As a parent it is just so overwhelming I cant even imagine what Maddie jo is going through that we in no way can comprihend. I quess what Im trying to say is tell everyone you love just what they mean to you! Never take anything for grantide. Again thank you all for you support and prayers, God Bless-The Norton's
Blood work done for Maddie jo and 2nd MRI for Allie done now its a waiting game , again! Please keep them both in your prayers. Allie's surgery is covered by insurance but Maddie jo's is not. Our family is going through one -no THE roughest year ever. I truly dont know how we are going to make next treatment, but I will some how make it happen. Thank you to all who have supported us and made the 1st treatment possible. Like I have said before the number above isnt correct, the 1st one cost over $20,000.00 and $18plus was from number above.We have a couple thousand saved in Bank account called ''for maddie jo's treatment at MSUFCU so there is a little more but as a father it just looks like an unreachable number. Of but I thought that before and by the grace of God we made it. But time is running out and I will admit I am scared. Please pray for my girls or send good vibes their way, they deserve them so much. I watch this demon destroy my daughter a little more every day in every way from health, personality, strength, passion, pride, as parents this is the worst thing in the world to see your child suffer literaly every day. Please please keep them both in your prayers! Thank you and God Bless, Doc.
So very hard right now. She hates seeing things wrote about her and I have cut back, but I also told her that she is the face of PANDAS right now she is doing something very courageous by being the face and voice for thousands of children. But at the same time I understand she dosent want all the attention on her. School is starting up and she is missing out again. Doctors say no way, she's had some very bad months. We are hoping Stanfords Childrens Hospital can help more.WE along with every other parent whos child suffers from PANDAS needs all of you and your friends to call your state rep's and tell them this needs to be recognized in Michigan or any state you are from other than Arizona they have. With out the recognition no insurance will pay and children are being mis-diagnosed. 1 in every 200 kids have been diagnosed with it. They say there is not enough clinical research, but since 1999 there has been thousands upon thousands of papers written about it and comfirmed that it is real. But just because our government and society is run by the hollywood elite and no big star has jumped on the band wagon we are not being heard. ENOUGH is Enough how many kids have to live in a bubble or 80 % in one before the states will go ''Hey this is a huge and growing problem!'' They have enough research thats B.S. to tell us and all the other parents they dont is a out right lie! A new one was just released 2 months ago that has clinical proof again. Please make that call and lets help these kids and there families get back to a normal life, if they can and its not to late!!! This distroys a childs life and ruins families, it must be treated with out the family losing everything they have. Thank you all God Bless Doc Norton and family.
I want to explain this. The amount is correct but this includes the money that was used for the first treatment and doctors visits. When we deducted from the (18k plus ) the go fund me deductions we were 4 hundred shy of just the treatment not including Doctors 2400. I am not complaining here its just some people think we have the amount above we do not. Minus 18700. (thats close) and that is what we have to go for next treatment (then minus go fund me fees). Last treatment was $16,777.77 and docs fee of 2400 were not including Chicago and the three days we have to stay. That cost will change the meds alone are $1000.00 per pound that she weighs. She is 4 inches taller now so I am sure its more. And yes we save what ever we can, we are still catching up from being so far behind on bils because of last treetment. We have lost or sold everything. We do not spend money on anything but what is needed, we dont take vacations go out to eat . My business is gone because I stayed home taking care of her and lost all clients and sold all equipment to stay alive. Please no that everything we raise is used just as we say it is. I pray everyday for a mirical to happen and she be healed. Also pray her sister will be healed also, her medical is covered by insurance as it is a 7mm mass that has attatched itsself to the base of her skull and is trying to attatch to her spinal cored and causes her daily pain and balance problems. Im not trying to give a pity story her, just what is real and effecting my family on a daily bassis, please say a prayer for my girls and again thank you all for your continued support!! We love you all, God Bless-Love, The Nortons
Trying times my friends. My faith has been tested to its limits. I wrote this awhile ago and it so fits. Its a beautiful crisp fall morning, the kind of morning when there is a slight breeze which helps the leafs that have just fallen from the trees dance across my yard.
The sun is bright but not that overpowering brightness of August but a gentle calming light that only a fall day can bring.
My coffee is perfect as I take a smallsip on my way out to the deck. I stretch while looking at all the beauty outside, My home my safe spot, ahh serenity.
But I sence a darkness lurking somewhere. I know it is going to take away that sweet serenity.
I ignore the feeling and take another sip of my coffee, but now it seems bitter. I look up and the sun has gone behind a cloud, the leafs are now perfectly still.
I close my eyes and listen.........nothing no birds no sound at all everything is perfectly still.
I open them up and there it is...thatthat dark presence that always seems to pull my serenity from me and causes the wind to turn cold.
The leaves it seems are now scrambeling to get off my lawn and are not dancing like before.
As if the also feel the dark presence and are running for cover.
They make it to the woodline and find there cover, but as for me ... I am still out in the open with no shelter from this monster.
I pray that God could just make it go away. Not just for me but for my girls and my wife.
I know it os a test from God but I also know it is a test I cant pass. So why do my wife and daughters have to pay for my punishment, my test. That only I brought on. The demon is winning and sometimes I think ''Just take me!'' But then I start fighting it off again.
I feel my being here is a darkness that they have to also go through. Everyday I fight so hard not to let it in.
What is the answer? Will I ever know ? Or will the sun always fade, the wind take the leafs to there shelter while leaving me in the open
Loseing everything and everyone I love , while dieing old and alone before my dept is paid and peace comes over me at last.
I stay and I fight because my girls and every other child out there needs a voice some one to fight for them and make sure they are heard. But my family needs prayers more than any of you can imagine. The next treatment is in sept and I am asking the Lord for quidance on how to pay the bill witch is due up front at time of service. If she is the same weight it ( because the meds are $1000.00 for every lbd the patient weighs) is $ 16,777.77 and Docs fee is $ 2400.oo plus to get to Chicago and stay and get back. Last time PHP sent us $97.00 for treatment. Lord please guide me in the right direction to take care of my little girl.
Chicago doctors trip was bad. We are starting steroids again and other meds to build her up for another treatment. I wanted to let everyone know that Saturday the 12 tomorrow the vet in Webberville is opening at 9AM and all proceeds will go to Maddie jo. When we go for next treatment in 3 months if she is strong enough and her immune system is built back up we are looking at another $ 19-20k . All because our government has changed the insurance industry so much that they will not cover anything. For our last treatment they gave us $96.00 dollars, really that was for the 1 bill that was $ 16,777.77 . No one not The affordable health care act PHP or BCBS will cover her treatments. Even though 160,000.00 kids in USA have been diagnosed with P.A.NS or P.A.N.D.A.S. That's 1 in every 200 kids. That's as relivent as pediactric cancer, peteatric diabeites and ALS BUT they still ignore it. Go to The Pandas network and sign petition to make October National PANDAS awareness mth. PLEASE> Thank you all so much for your help, she is fighting as hard as she can but some times says she wants to die because she cant take it anymore. Let me tell you as a parent that is the most painful gut wrenching thing you can her your child say right along with ''Daddy please make it stop!!'' and you cant!!! Our family is so torn up by this daily fight, one of Stephs friend came over and stayed with her and the girls the other night. She knew about everything but after experiencing just 1 night was in tears and beside her self with what Maddie jo goes through. Unless you have seen it and been through it don't judge because you just can phatom they pain and stress we as a family deal with 24/7. God Bless you all and thank you for the prayers and good vibes for my little girl. Peace be with you all. Sorry this is typed so sloppy but the tears are rolling down my face so much that it is hard to see keys.
July 12th, see there face book page please for more info!!!
Webberville Animal Clinic will have a charity fund raiser for Maddie Jo Norton. She is a Webberville resident that has PANDAS, a very serious disease that is expensive to treat. She is going to be a junior at Webberville high school.
The clinic will open for business Saturday, July 12th at 9:00 am and go until the work is done. It will be business as usual and walk-ins welcome. The only service not offered that day will be surgeries. All revenue generated during the fundraiser will be donated to Maddie's medical expenses.
There will also be a raffle for a dog gift basket and a cat gift basket. $1/ one ticket and $5/ six tickets.
So bring you pet in for a check up and other services, it will greatly help a local family.
Call (517) 521-4207 for more info.
Getting everything ready for Doctors in Chicago. Been so slammed with everything lately. She has been doing the same, just wish it would be better. Allie is doing ok also we go to Doctors again to see about the surgery to take out the piece of her skull so the growth will stop hitting her spinal cord. Its 7mm in size so they will have to replace the piece of skull with something else. Praying Maddie jo will not need another treatment but blood work isn't giving us much hope. Please continue the prayers and good vibes for both my girls. Just don't know how much more I can take. All the money raised plus that which I borrowed has been spent on Maddies med bill's not sure what I will do if she needs another treat ment, but I will make it happen! Allies are covered by insurance thank God or this could have been so much worse. So there is always good in a bad situation. God Bless my friends and hug you children every chance you get no matter what age because life can change as it did with us in a mila-second!
Things not looking any better. She has had a couple good days and even went to the movies the other night, but paid for it when she got home and had a very bad night. The days are as bad as the nights now, the regression has become 75-80 percent worse. She fights so hard to stop the events but the dam thing's come anyway. She is so strong you can not even imagine. Our family is so upside down right now the desiese just rips through everyone of us. But we are keeping our faith strong and give all glory to God as we know he will make her well again. We go back to Chicago in June and hope the Doctors have answers for us on how to stop her pain. While praying it is not another treatment as we have no way to get it right now but I am sure if we have to God will guide us and we will make it happen. It will happen if she needs it I will make sure of it. For now we go from day to day and as a family with Gods help we will have Maddie jo back!! Please continue the prayers and good thoughts she needs them more than anything. Come August 26 she will have lost a year of her life to this unspeakable illness that she can never get back. She cant go to school or play the sports she loves so much, she really cant do anything that we all take for granted. This is no way for a child to spend their life in a bubble afraid that the regression or seizures will hit at any moment. Fear of (in her eyes) looking funny or acting funny and having people look at her and stare or feel sorry for her. She wants no pitty she just wants to have her life back again. Please keep the prayers and good vibes coming!! Thank you. Sincerely, Doc.
Sorry it has been so long since last update. Steph is almost out of FML so she cant take the day off during the week that she was and my heart has broke as I have had to go back to work. It has been so hard, I have been with her 24/7 since she got sick and now cant be . She is always in great hands but in my head all I can think is they are not mine, it is so hard but we cant lose our house so I just have to suck it up. We got her latest blood work back and it was not good. Please continue the prayers and good thoughts for Maddie jo she needs them very much right now. We go back to the Doc in Chicago at the end of June. I am holding strong in my faith that God has healed her but also am so scared about the blood work it was very negative. She has been through so much and has already lost a year of her life. It has gotten worse the last 5-6 weeks, she has multiple seizure's every day and the regression is worse than it has ever been. She feels them coming on and trys SO hard to fight them off but just cant. Please from the bottom of my heart I ask on my knees for prayers or good vibes for Maddie and her twin Allie as this has been a terrible year for her also. God Bless you all and thank you for the prayers she has received!!!! Insurance update-another turn down and also asking for more info on other clams, they crack me up we have given them everything under the sun! I cant believe how screwed up they are.
Sorry it has been a while. I had to go back to work but after closing my shop for almost a year to take care of Maddie jo it wasn't going to work so I got 1 job and am working on a 2nd. Just very hard to leave her even if its in great hands -its still not me. She has had some very big set backs, but also some good days. We continue to pray every day that when we go back in June there is good news. Thank you all for your good vibes and continued prayers for our little girl!!!!! God Bless and keep you all. Sincerely The Norton's P.S we are still fighting insurance, they now say they never denied us BUT they wont pay......WTH!! Yes they did and isn't this another turn down just with different wording? (other than Denied) Glad I keep complete records of everything. I even gave them the person's I talked to each call and date, time and duration of call along with snail mail supporting my end. They didn't like that much.
Had some bad set backs this week. Please keep the prayers and good vibes coming!! She is suffering a lot with events every night again. God please make her 100 o/o please!!
Maddie jo spent her first night away from home last night with Grandma and Grandpa and Allie. She was only 3 min away and had a great day so when Allie wanted to spend the night Maddie jo was sad because she couldn't. Well we decided to let her because of the good day. She did great and had a blast!! I didn't sleep at all but it was worth it because she had a blast! Big step!! Do to all the prayers and well wish's. Thank you all so much!!!! God Bless and in June we are praying for remission!!!!!
She had a perfect day yesterday!!!! Praise God, praying the 1st treatment is working. Still have months before we know but so go back to Chicago in june to see if remission is starting.
Thought we were at goal for June trip to doctors but after phone call today found out figures and everything was , well I don't know weather to say off or misleading on money raised the other night. Now back to square not 1 but square 2.5. Feelling like ''I'' let my family down.
Get well soon Maddie jo
7 minutes ago.
Hard when you go from a great day with no events or regression to a day with them. My heart has broke into so many pieces over the last months you would think there was nothing left. But every time she has a seizure or regression there is still some left to break.. PLEASE even if you cant come to any fundraiser PLEASE PLEASE more important to us as a family please say a prayer or send a good thought and vibes to Maddie jo! Please. They do help and she will feel them. Thank you God Bless Doc.
Little Head ache this A.M then good and NOT ONE EVENT TODAY AT ALL!!!!! Yes its happened before but only 4-5 times so I know it is a sign from God!!!! We are going in the right direction. Thank you all for the prayers!!!!!
We made it thru another day of a sour tummy and headaches. They should start getting better Tuesday -Wednesday . Sorry I have not been on her page with a lot of details but we are all together as a family to comfort her and are not really doing much of anything else. When this phase goes away and she is having her seizures and is " her normal for now" we will start watching for improvments. I know the Doctor said 7-9 weeks but we are praying for any improvement so we know it may be working. Then in June when we go back for more testing we will hear the word we have been praying for crying for and dreaming of ''Remission''. I have tears falling down my face now, they are for what she has been through all these months and faith that she will be healed but also I am ashamed to say from fear that it wont work. But that fear is going to go away because my faith will over power everything. As a dad I have to cover all ends to make sure my family is ok, but that fear will be taken away. She will be healed by the grace of God! Please continue your prayers and good vibes for her please pray for rest she needs to sleep then please ask God for remission to come and for our girl to come back to us. Thank you and God Bless-Sincerely The Norton's
Wild for Maddie jo dinner in bath see pics for details. Great night only 150 tickets and pre sales have started see flyer on how to get tickets. The contact # is on flyer. Cant be bought on here. Thank you, The Nortons
Head aches are bad today. They went away for a couple hours and her Steph and Allie went to store, but it came back. She has been in bed most of the day. We have to call doctor and see if we need to start steroids again. They can help but we have to make sure she has no fever for 24 hours before we can give them to her and doc says its ok.
Very rough night tonight. Over tired and cant sleep , because of med's and having events. They said it would happen but hopefully it will be starting to get better Sunday. She NEVER once complained through both days of treatments even when feeling terrible. She just went with it and would even smile on and off. My daughter's always prove to me how strong they are! Hoping headache and sour tummy goes away and she gets to sleep!
To explain to everyone , she is not cured she has had the 1 treatment that could put her into remission and then 2 years of antibiotics that should keep her there. After 2 years it is still a question hell the 2 years is a question really. Hopfully she will not need another treatment but if she dose that ok, anything to make her healthy. As for now we will still have seizures and events with regression in age,swelling of the brain and such. But for 6 months (really prob 2-3 years but not to this level of course) we have gotten through it with help from family, friends and our faith in God. So we will make this, she will be healed and all glory given to my Lord and savior Jesus Christ!
We are home traffic was good only 1 traffic jam. Had some intense times with MJ in the van but she came out of it and did ok other wise. Thank you for your prayers and please continue them. These next few months are filled with Doctors visits here in Michigan and then back to Chicago to keep an eye on ever thing and our prayers are for signs of remission. Things wont be different with her for a few weeks so she will still be struggling and having issues but with the grace of God, then we should see some improvments. Again thank you so much for everything please keep her in your thoughts and prayers. Thank you, Sincerely The Norton's.
Long night but we knew that was going to happen. She is sleeping good now. Of course we has freezing rain and now snow! We will just take our time going home when we leave.
We went to dinner and had a great time but now it is showing. She will have a rough night but says it was worth it!!! That's my girl. All is good just head ache and week.
DONE!!!!! Today meds were stronger and she has head aches and upset stomach but still smiling and saying she is ok. She took a nap today when we got back so I know she was in pain. But she is up now looking at computer vidieos with Molly and Allie. Please keep prayers coming and we will know in June when we come back if remission is set in. Now just more docs visits blood test and taking it day by day! I know in my heart God has healed her and she will be her self again!!! Thank you all for the prayers!!!
All plugged in for day 2, praying this goes as well. She is being so strong It is amazing. She slept great last night witch was a blessing! Thank you for continued prayers and good thoughts and vibes for my little girl!!!
1st day over. She is doing really well. Went thru 2 bags and 3 bottles in IVIG today. Make her feel so so but she is so strong!!! Please keep prayers coming! Thank you. ! pic has her during the 7 hours and 1 has her sitting up after they were done. ! more day than time will tell in the next couple months if she has gone into remission. God Bless our little girl 1 more day and she is done for awhile. Big thanks to our friends for helping us get here and really big thanks to our families- moms and dads brothers sisters without whos help we never could have made it this far. Thanks to our family for getting us over this 1st hurdle, we love you all so much.
We are getting ready for next week and the treatments for Maddie jo. I know in my heart the Lord is working with the doctors to heal her and get her in remission so we can have our outgoing smiling happy go lucky girl back as well as our family back to our own normal. The relief for her twin Allie will be so great and for me and her mother to have our sweet healthy girl back will be a miricale I will share with all! Praise God and all of you for your prayers, good thoughts and good vibes they made all the difference in the world also. Thank you and yes we are very optimistic for remission. I know the Lord is working at that through our prayers and yours. Thank you, Thank you, Thank you!!In the next couple months we expect to see great changes in our little girl. Then she can play with her new Nephew Camden who she loves very much!!! God Bless form a greatful family, The Nortons
I want to say a big thank you to an outstanding young lady. Rene Castillo a 15 year old freshman at Williamston High school, for some reason she formed a bond with Maddie and has never met her or anyone in my family. She took it upon herself to start fundraiser's for Maddie jo. Everything from setting out jars for change to organizing a pizza party with Brent's pizza for the class that raise's the most change for Maddie to spreading the word about Maddie jo's illness. She has gone way out of her comfort zone for someone she doesn't even know. Rene loves softball, basketball, 4H, horse back riding and camping. I talk at schools and advise people about teen suicide awareness and bullying when I do I say what my friend Kevin Epling has always said- ''BE THE CHANGE!'' well this young lady is being the change and standing up for what she feels is just. I can not wait for the day when me and Maddie jo get to meet this outstanding young lady. She should be recognized by the community for her selflessness and for showing what can be done when you believe in something no matter what your age. I also cant wait to meet her folks and shake their hands so I can look them in the eyes and tell them what Im sure they already know, they have an outstanding daughter that everyone should be proud of! God Bless this young lady and may she be an inspiration to us all that if you believe in something and set a goal you can achieve it!!! God Bless Rene and her family. You have a very special place in the hearts of my entire family, Sincerely The Norton's.
Sitting hear tonight me and Steph were reflecting on the last year. From a great summer vacation to family fun times to the worst day of our lifes 08/26/2013. When our life's turned upside down, Maddie jo got very sick and we went from Doctor to Doctor and hospital to hospital trying to find out what had happened. No one knew and they were quessing saying to medicate her up and put her in a special hospital. Our hearts were so broke, we knew this wasn't the problem but know one would listen. Then fimally our ped's doc's said hey we need to check something. BOOM they find out what is wrong. Great!!! But then insurance says we wont cover the doc in Chicago even though he is the leading one in his field. All because her autoimmune aliment isn't well known and was only discovered 16 years ago so your on your own. Then find out you will have over 20k invested to get treatments and transportation, meds, doc visits etc. and we have lost a income (mine because I need to be with her 24/7 and am the medicaly qualified one) So you see the light at the end of the tunnel but its the biggest train in the world. You see we now knew what was wrong and had a treatment that would have in her case a 62 percent chance of putting her in remission but you need to pay for it up front. But after you have to wait for multiple turn downs from insurance that has already said no! Because of ''government regulations'' Then you try a web site to raise a little money and out of no where people friends, family people you don't no start helping you and you get so close you no you can make it. But money is no good..cant pay in cash...WHAT? well ya finally get passed that by pulling in every favor you can. So now we are were we need to be and have my little girl scheduled for treatment and we no by the grace of God she will be ok. But only because people cared enough to stand up and support you and you family. WOW humbling isn't even close to the emotion we feel as a family. Thank you God Bless you all and I will be there when you need to help in any way I can just call me!!! Thank you so very much! Sincerely The Norton.
Treatments are set up!!!!! 1st part of March, thank you Lord! We fought and fought and are going to make it, I am going to borrowing what ever the balance is from a family member. We are going to get my little girl Healthy!! She has a 62 percent chance of remission for at least 2 years!! She will go into remission I have faith in that 100 percent!!! Thank you all and PLEASE continue the prayers!!!! God Bless We Love you all, the Norton's.
The days have been ok but the nights not so much, the regression gets bad. She even forgets her pets and for those of you who know her that is unreal. Praying the treatment is scheduled by the doctor soon. Please keep her in your prayers she needs a few good nights rest and worry free days before Chicago. Thank you!!!
The antibiotics are working! She is so much better today, we are ready for IVIG just waiting for comformation from doctor and hoping he lets us slide on balance seems how we have most of it. Then we can get Maddie jo back!!!
Having another rough afternoon. She is back on antibiotics. We are ready for treatments and they will be soon. Will be nice to have the old Maddie jo back!!! Praise God for the 3 doctors that came into her life and found out what the problem was, this could have been so much worse. But now we are on the right track!!!!!
Will be doing an interview with Steve Gruber on WJIM Thursday Morning at 7:05 A.M. to talk about what is going on please tune in!!! He has a great show every morning but this one will be very close to my heart!!!
Rough day for Maddie jo today lots of events 1 after another. She is finally sleeping, thank God. The regression is bad today. Want to get treatment done now but still waiting for docs paper work.
God Bless you all for the prayers and good thoughts!!!!!! By demand we are back up, do to mounting bills for Maddie jo and everything else. I also had such overwhelming request's to put this back up. Again thank you all!!! Sincerely, The Norton's
This virus we all got has made it so hard for Maddie jo. She is really having a hard time. Allie is feeling better and has her energy back, so we are headed in the right direction.. Again thank you all so much gor your continued support. God Bless you all!!!
The fever is staying down but she is very weak. I cant stand it when she cant form the words she wants to say, because of the regression. She gets so up set that it causes more events. Thank you for the prayers please say more for her and her twin Allie for she is running a fever and feeling crappy. I so want them to have some normal days or even a day!
I didnt look for the whole amount but now realize I have to the 1 treatment is $16k doc is $2400.00 and all the other follow up visits cost are just unreal and with me not being able to work since she got sick everything is behind. My daughter Madison ( Maddie Jo ) was a normal happy 15 year old this summer she made the Cheerleading team and the volleyball team and was all ready for school to start. Then on August 26,2013 she started have seizure like events, up to 30 a day and also regression in her mind of what age she was, she will act like a 5-6 year old and not know where she is or who she is. We went to different doctors and hospitals trying to find out what was going on. Finally 2 ped's doctors tested her for PANDAS Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. It is caused by a strep virus that makes her autoimmune reaction to GABS infection produce antibodies that continue to interfere with Basil Ganglia function causeing symptom exacebations. Onsets can be OCD meuropsychiatric symptoms, sensory or motor abnormalities. The antibodies in her blood are attacking her brain and causeing neuropsychatric conditions. In normal words, she has events 10-25 times a day (they are just like a full on seizure) she will act like a 5-6 year old. The longer this goes on the more danger of the brain damage being permanent. She was a straight ''A'' student full of life and now she is living in a bubble for lack of a better term. She has to have this IVIG and the cost is (and has to be paid up front as her regular visits have been) $16,000.00 per treatment we are praying she will only need 1 My wife has insurance through her work but it dosent cover Autoimmune disease's or P.A.N.D.A.S. because its still in research and has not been recognized every where yet. With the doctor visits at $500.00 per hour and all the hospital bills and other doctors we have lost all our savings, maxed all credit cards and I have sold all my collectables we have exhausted all avenues. I am self employed and have not been able to work since she got sick because I am her care giver. She needs 24/7 care. I am a former firefighter and EMT so it is easier for me to take care of her with my background. The Doctor is in Chicago and he has her on strong antibiotics for 2 weeks and then steroids for 1 week to build up her strength for the treatment. It takes 2 days, 1st day is 7 hours and the 2 day is 6-7 hours long. Basicly the replace her blood with blood that has had certain anti bodies removed. That way they will stop eating at her brain. IF THIS IS NOT DONE NOW SHE WILL HAVE PERMANENT BRAIN DAMAGE. She is on the edge of adolesonce and after that the treatment wont be affective. I just want my little girl to have a normal life again and be able to enjoy things we all take for granted. This has taken a huge toll on our family mentally, physically and financially. She has a twin who's life has been turned up side down also she worries about Maddie jo and also about if this could happen to her also. Please help any way you can. This is the most embarrassing thing I have ever had to do, but I have to swallow my pride and get my little girl healthy. We have so many more med bill's that have taken us down but this is a treatment she needs the most and I will find a way out of our other problems, If you cant donate please say a prayer for her for we need them also. She is on Face book in ''get well soon Maddie jo''. Thank you God Bless!