I am so happy to report the fundraising efforts of our hometown (Johns Creek, GA) community. A total of $13251.90 was collectively raised in a variety of fundraising efforts.
Since this Team Tyler event was publicized (and I am eternally grateful for the group that was a part of this), the online contributions increased by $6,269.
I am very happy to report that with this $40,000+ raised online (and offline) AND with the $30,000 my family has paid out of pocket, we have successfully reached and exceeded anything that I every imagined this to be when I started this effort back in March.
To all of you, we are very grateful, and words can't express my appreciation to the monetary AND time sacrifice all of you have made. Although, the final bill has not been paid (and there are many more to come with upcoming treatments), I know that we will have excess (because that is what God has laid ahead for me - more to come on that later). I would like to announce the initial planning stages of the "Tyler Lillard Epilepsy FOUNDATION." This will be a non-profit foundation that will assist families in financial need of certain expenses during their hospital stay. I will tell you more in the near future as this project is in the initial planning stages.
We love you and continue to solicit your prayers, kind words, and all that you have offered to Tyler and my family.
Good Morning, All - I am sorry I have not been on here in the last week. I have been working and trying to prepare for the upcoming school year. A quick update on Tyler: he has had an awesome week! He has been seizure free (still has tics, but I'll take them) this week. Also, he has been very happy and NOT TIRED at all. I am so pleased that this bout of medicine may be working and balancing out (fingers crossed). The doctors have even decided not to change the medicine for next week. That is phenomenal news (I'll take baby steps).
Also, we have the final numbers from the Team Tyler fundraiser (thankfully donations were still coming in after the fundraiser). I will be posting those numbers later today. Have a great week.
Quick Update for all of you. We hav been to the doctor twice this week (yep, and it's Tuesday). Tyler still gets blood draws almost once per week. I still haven't made a decision on what the next steps are for Tyler's treatments. The options FOR are (1) continue radiation in Jacksonville (Mayo), (2) look for another method (SEE ATTACHED ARTICLE....VERY VERY INTERSTING - AND NEW! I keep telling people there are new technologies that are out there and that become available everyday - it's called SCIENCE...). This is something that was discussed at Tyler's last appointment, (3) DO NOTHING (for now). I am leaning towards just waiting it out and allowing the experts to get these seizures (totally unrelated to brain/eye issues and tics) under control. I am continuously leaning on God for direction. I hear Him say, "Be Still for now. You have time to make a decision."
Thank you for your continued and effortless support for Ty. Please continue to pray.
Hope everyone had a great 4th of July holiday (we did) and a great week! Just a quick update. I am still waiting on the final report from Mayo (I have some parts, but I am waiting on the neuropsychiatrist and the neurologist and the ophthamalogist reports). I just want to say that I have received some extremely kind words of encouragement this week. As most of you know, the feeling of hopelessness began to take over, but I have talked to some phenomenal prayer warriors (local and afar), and I just appreciate the uplifting words and spirits that all of you have for my son and my family.
Although, seemingly the road is over, it is not. I think medicine is a funny thing (and I shared this with someone earlier this week: I am a scientist/chemist/engineer to the heart; I live for science - until it deals with my own child, then all science is out of the window, and science of motherhood..smile...takes over). I think now they are ruling out some of the treatments that they can and can't give Tyler in order to narrow down what they can do.
Tyler had a great week until last evening. He had a seizure (grand mal) on late Thursday evening, which has put him in a postictal state (basically he has slept/is sleeping for hours on end - sound asleep). All I can say is UGH and sigh.
I pray all of you have a wonderful weekend. I know we are going to REST!
PS We are still awaiting the final numbers for the HUGE fundraiser. With us leaving and donations still coming in AND the holiday AND vacations (LOL), those numbers are slowly trickling in. I (and the Team Tyler teamsters) appreciate your patience.
Hello All - I appreciate your patience and support with me through this difficult time. I know many of you have been wondering and inquiring, and unfortunately, I didn't want to provide an inaccurate update. Here is an update from the Mayo Clinic:
The neurosurgeons attempted to surgically remove the tumor last Thursday. During the MRI, they discovered the tumor is inoperable. It is pressing on/wrapped around the oprtic nerve in an awkward position. Now, from this (and several more tests), they discovered the mass is not cancerous (never has been) and it will ultimately affect his vision - leading to permanent blindness. It was also determine that this is not causing his epileptic seizures. The next plan (since removal is not an option) is to shrink it through a radiosurgery/radiation process. Options are being explored (for location convenience and possible insurance purposes) on where this will/can be done.
During this visit, it was discovered through an extensive brain monitoring process (vEEG), that the different seizures have an unknown cause. It was mentioned that 70% of people who have seizures have no know cause. His medicine for siezures is being extensively adjusted to begin to control his seizure activity.
Finally, a third diagnosis was discovered. This is/was extremely surprising as it is something totally unexpected. The seizures that Tyler was having were not seizures (determined on the vEEG). Tyler has tic disorder, not Tourette's (because he does not have vocalized outbursts). He has about 30-50 tics (eye rolling back, throat grunting, involuntary face and shoulder movements, etc. - originally thought to be seizures) per day. There is no immediate curefor tic disorder. it is something that will continue to cause him to lose focus (along with his visual impairment possibly) and continue to cause him attention concerns in the academic setting.
Insurance update (ugh): even though, he didnt have the surgery, he does still have some diagnoses not covered by his insurance. He was also seen by a team of specialists and had extensive testing and monitoring (put to sleep twice) at Mayo. So, with all of your donations (thank you, thank you, thank you), the fundraising outside of this page (totals updated soon), and the out of pocket payments I have made, there was a substantial amount paid towards his final bill. I am forever grateful to all of you.
Finally, Tyler is doing fine. He knows that he will be continuing to fight the 3 above mentioned things, but he is a fighter.
And I am exhausted, frustrated, prayerful, tired, hopeful, hopeless, sad...all in the same breath. Please, PLEASE continue your prayers for Ty. He is still on the journey.
Good Morning Friends & Family. I'm overtaken by a wealth of emotion at this moment. We are here at the Mayo Clinic (after 2 days of traveling) and I can't help but just share this surreal feeling. I'm thankful to each one of you for (1) allowing me to promote the awareness of epilepsy and how it affects my son and our family, and (2) for your contributions (both monetary and spiritual) that will allow me to provide this experience for my son with no distractions while disputing with the insurance company.
Please don't stop praying for my son. One person wrote to me (the real journey begins now,, thanks Amy W.). I will be posting (as soon as I know) how to send letters, cards, etc. But I do read emails (and I try to respond).
We are off to our day of testing....until later.....
Good Morning online family! We are hours away from heading to Mayo Clinic, and I think Tyler has got to do ALMOST everything he has wanted to do in these last couple of months...LOL.
On a serious note, I can tell he is beginning to process the reality of the situation becauuse his line of questions have become more specific and he is focused on the future. He did ask about wrestling, which is wonderful he is thinking about the future. More to come as he spends the day with Grandpa celebrating his 70th birthday!
Good Evening...I haven't been on here in MONTHS. My apologies as I know many of you used this to keep up with us. Well, I do want to start off saying THANK YOU to all of you for your generous donations AND your continued prayers. Not only are we fundraising on this site, many people are also doing and have also given their own separate/private fundraisers. Words can't express how grateful I am to each and everyone of you. I'm also thankful to the vendors, suppliers, volunteers, venues, etc. for giving their time, resources, etc. to make last Wednesday's fundraiser to be very successful. (A very special thank you to Mr. Jason Snelling for giving his time and his family to our fundraiser as well. He also shared some very personal stories with me to make this journey easier).
As we get closer and closer to the surgery date (Thursday, June 20), my emotions are getting the best of me. I am very excited this time is now here, but I am very very VERY NERVOUS on the "what might happens." I know with ALL of you praying friends and family, we are covered, and I also know and feel that my God didn't bring us through all of this to just leave us. All I say is let His will be done.
Finally, I do plan to blog on this site and on facebook on our journey. So, please stay tuned. Until next time, please continue to PRAY WITHOUT CEASING...love each and everyone of you...Tina
Good Morning, Friends and Family..this time next month, we will be at Mayo Clinic (FINALLY) for treatment. I wanted to give a quick update. Tyler's tumor is growing. He has been acting really strange and his eyesight has been tremendously affected. It is affected so much that he has decided (on his on will) 2 weeks before state to not wrestle anymore. This is huge, but his eyes are really affecting him and they are "hurting" (per him). He is also starting to verbalize how scared he is to go to Mayo. I continue to solicit your prayers and thoughts as we get ready to enter this part of our journey.
Also, the fundraiser is still open. I have just not "campaigned" so hard becuase it is the end of the school year and because we have been preparing for next month. Thanks to all of your contributions on this front.
Tyler had an exceptional week this week (with 2 medals and the opportunity to be on his school news all week).
We have a countdown going on until we get to the Mayo Clinic. And there is still time to share and donate for his cause.
If you are a local or if you are prefer to mail in, please send/take donations to:
Bank of Herrin
... Attn: Tyler's Epilepsy Fundraiser
101 S. Park Avenue
Herrin, IL 62948
donate to: www.gofundme.com/tylersepilepsyjourney
Thank you for your prayers and continued support
Good Morning, Friends...I haven't posted on here in a while as we have had new developments. First of all, the first Mayo visit was postponed. The tumor has grown, and we are now doing radiation to prayerfully shrink it. Secondly, because of this, he is having some vision issues, so his medications have changed (a challenge in itself). Lastly, the Mayo visit for April has been confirmed for June 18-22. This is when we find out when the surgery will be, do all of the necessary testing, and just get more answers to these seizures (yes, he is still having them).
Next, Tyler's doctor's have told me to allow him to do whatever he wants (within reason of course) because this next year, he may/will be limited. So, of course, you guessed it - he is WRESTLING! There is a short season from March to May, and he is doing well!
Lastly (but certainly not least), thank you to all of the generous donors. We are almost there (check out update). I appreciate each and every one of you. Thank you to those who are continuing to give to the trust fund and to this site. I will be ramping up efforts to get to our goal starting back in May. Love, Tina (& Tyler)
Good Evening, Facebook Friends & Family. I am back on the grind of fundraising. We have been going through medicine change (since last Monday), so there has been a slight adjustment to his moods, sleep schedule, appetite and so forth. We have also had to see the optometrist a couple of times because his vision is failing in his right eye. I appreciate the support and love we have received thus far. Please continue to donate, share, and like this page. Thank you. Be blessed.
Ok...I have not been posting for about a week now. This has been one crazy week. First of all, let me publicly thank everyone who donated and came out to the fundraiser in Colp last weekend. I will be posting the results on here and in my blog the donation website. Please check out the video attached to this post.
Also, yesterday we found out that the Mayo Clinic appointment has been rescheduled for June 18 (so the surgery has been pushed back as well). The tumor is just in the way of Tyler's optical nerve, so they are going to try meds and radiation (again) to shrink it. We will be doing that in Atlanta. The meds have started, and he is reacting just ok. I guess he will need to stabilize. More on this later.
Finally, we are celebrating Autism Awarenes month. So, I will be continuing to post those stats. Have a great day...more to come.
I just posted a picture of 2 of the many angels that we have been blessed to cross paths with. These 2 very special ladies, Rachel and Nicole (sisters of one of Tyler's wrestling teammates), were extremely diligent in helping Tyler's Fundraiser for Epilepsy. I was told by their wonderful parents that they went out in their neighborhood as soon as they heard about Tyler, and they collected $235. We (their parents and myself) thought it was only fit for them to present it to Tyler. He was very grateful (in his own way...LOL). Thank you Williams Family for your generosity and your concern. I appreciate all of you more than words can say.
Great News!!! Now there are 2 ways to donate to the Tyler Lillard Epilepsy Fundraiser. We (my team and I..LOL) finally got a fundraiser account (lots of paperwork) set up for Tyler. If you are interested in donating in person or by mail. This account is not tax-exempt (sorry it is because it is a short-term fundraiser).
Please mail (or stop by if you are local):
Bank of Herrin
c/o Tyler Lillard Epilepsy Fund
1001 S. Division Street
Carterville, IL 62918
If you are local, the Bank of Herrin has 5 branches (Herrin, Marion, Energy, Cambria, and Carterville).
Please contact me directly if you have any questions! Thank you.
Just got off the phone with the Mayo Clinic - wow..they set up everything for you! I am still nervous about the upcoming visit, but they do make you feel very comfortable. I also was able to talk to a Social Worker about the insurance claims being rejected, and she is looking into it.
Good Afternoon, Friends and Family - I have some news to report. We finally received a date for our first Mayo Clinic visit...it is Friday, April 5! This is our consultation visit. We will get his measurements (for his procedures), do some lab work, check his vision, and set the next appointment (surgery). Now, that we have that (and the 3rd appeal letter to BCBS), there are fundraiser deadlines that we must hit!
Let me give most of you background on the $50,000 goal. This process/procedures will cost in excess of $200,000 when it is all done. So, I am praying against all negativity and beliving that insurance (or something) will pay 80%. This means that I owe about $40,000 - $50,000 (not including travel). The first $5,000 (February) was already paid. There is $5,000 due this week (March) and $5,000 due next week (for April) prior to our first visit. Let's ban together to reach this goal!!
Thank you all who have gotten us this far and for future donors who will continue to press on.
Good Morning, Friends and Family - This has actually been a very tough week for me. I received all of the confirmation information (surgery process, length of procedure, recovery process), and I must say I didn't take this news well). I also received the news that our consultation appointment will be 3-5 days (don't know if this is good or bad). And that the insurance denied my 2nd appeal (submitting a 3rd one this weekend). However, I am reminded that weeping may endure for a night, but joy will come in the morning. I know God is faithful. I'm trying to hold on.
Today (which I didn't even realize that Tyler had no school...that is how bad this week was...lol), Tyler is hanging out at his wrestling coaches' house with his wife and children. Cindy is such a great friend (and I secrently think that Tyler sometimes enjoys hanging out with her better than me because she cooks waaaaayyyy more than I do...smile). He will hopefully get to see his 2 coaches today. He will enjoy that.
That's all for now. Thanks to all of you who made this week a successful fundraising week. Words can't express the generosity that has been poured out to Tyler and I from the kind words to the sharing to the phone calls to the donations. Thank you. It is not easy for someone who has been in complete control to not have control of something and to humble herself. God is talking...and I am listening.
Update: Ok...I have been so busy with the state wrestling tournament (Tyler won 2 by tech and lost 2, but he wrestled hard) and with planning our Mayo trip and receiving all of the support that I haven't been blogging! First of all thank you for all of the donations and the sharing. The word is out #teamtyler fundraising is in full-effect.
Secondly, we have heard from the Mayo Clinic! Our first appointment/consultation will be the week of April 1 (we are still coordinating travel) - that is Tyler's spring break. They are waiting on a couple more tests, and he has to get some tests done here as well typical blood draws, eye exam, etc.). From there, we will schedule the procedure - looking at mid to late June.
Lastly, please keep spreading the word and we are looking for more friends to LIKE and SHARE the page!!!
What a great fundraising day! I appreciate all of those who gave and all of those who visited the site. I do know the word is out, and that to me, is the most important part. Please continue to share. Through your sharing, the donations will come. I am confident that God has His hands all in this. Until tomorrow. Thank you.
I am changing Tyler's pictures out daily. Hope you enjoy!
Thank you to Melissa Russell for your donation to our journey! We appreciate it!
We are well on our way to our goal and journey to the Mayo Clinic. I will be posting continual updates (sort of blogging, I guess). I would like to personally thank our first donor, Brian Corday and the Corday family for getting our fundraising efforts kicked off. Love you guys.