**CLICK ON "UPDATES" FOR THE LATEST INFORMATION ON ALICES JOURNEY**
Click for
Daytime Show Clip on Baby Alice.
April 1st. Duke has decided to get their bone marrow transplant team involved. They want Alice seem immediately, we are just waiting on final approval from insurance. We have also talked with the NIH (national Institute of health) and they are very interested in her unique representation of Chediak Higashi Syndrome. For now, we are in limbo, and hanging on by a prayer.
March 27th 2019 - Alice is going to be talked about on the Daytime Show today on channel 8 in the Tampa bay area - 10amEST! Please follow her story at Baby Alice
March 20th 2019
Today we got a call from Cincinnati, and it's been hard to accept. They decided since her numbers are borderline, and bone marrow transplants are so risky (20%-30% pass because of BMT complications) that at this time, they do not want to more forward with the bone marrow transplant, yet. They want to wait and watch. They want to see her every 6 months to do all of their testing each time, and if her numbers reach a certain threshold than they will move forward. They did do HLA testing to have that completed, and Abigail, our 5 year old, is a 6/6 match. So when/if we move forward, Abigail will be her donor. The plan for now is to do weekly $10,000 infusions to try and boost her immune system. They want her isolated at home as much as possible, away from people, especially sick ones. If at any time she shows symptoms of going to the accelerated phase, they will move forward with the BMT. Honestly, im not that happy with the plan. I feel like we are gambling with her life by just watching and waiting for her organs to begin to fail. So we have decided to go to Duke in NC, to a specialist our immunologist recommended directly from the start, for a second opinion. This is not a decision to make lightly, so we want to ensure whatever the treatment plan is, it'll be the best option for her. I spoke with Duke today and although they need to verify insurance before scheduling us, they did say she would likely be seen in mid-April. So now it's back to planning another road tip. Currently, I am completely and utterly overwhelmed. Any and all help is appreciated. Its getting harder and harder to stay positive...
March 10th, 2019.
We leave in less than 10 hours for her first appointment with the Bone Marrow Transplant team at the Cincinnati Children's Medical Center. Its a 921 mile trip, and I'm driving up solo with both Alice and big sister Abby. Alex is currently flying to Arizona, and he'll fly into Ohio on Wednesday for her appointment, before flying back out to Arizona that night. There was so much to plan and organize, and there still is so much to do. I feel so overwhelmed with the driving, with the appointment, with my questions and fears, im just emotionally spent. We have a payment due on Wednesday for her out of state appt. I dont know how much it is, but I know we are STILL (after Everything this year!) $1800 away from her out of pocket max. Im honestly to scared to call them and find out what we owe, and im just hoping they'll be willing to work out a plan. Its so nerve wrecking, having to plan and organize and deal with everything by myself. I need help... Alice needs help. Her appt is Wednesday at 1:30pm. Please keep us in your thoughts and prayers during this very difficult week. Thank you to everyone who is getting her story shared, and to everyone who is able to donate! Remember that even $3 is a huge help and can add up fast!!
February 26th, 2019 the decision to move forward with a bone marrow transplant was given. We are traveling from Tampa, FL to Cincinnati OH to see their top rated pediatric bone marrow transplant team. Our initial visit will be in the next week or so, we should get an exact date tomorrow. Then we have to wait for a match to be found. The ONLY way to donate is to actually register with www.bethematch.org - its not the blood type that must match, but a blood protein called the HLA. Once registered with Be The Match, if you match with Alice that would be amazing, but you may also be matched with any number of other very deserving people. So please keep in mind that donating is a very serious, and selfless, thing to do. And theres no guarantee that you'll even be donating to Alice.
Our campaign with gofundme has been very quiet lately. I feel so often like we ask for so much, and are so blessed in some ways, that its hard for me to reach out and ask for more help. But we need it, and so I hope by putting it out there we will continue to receive support. We love you all and thank you for everything.
On February 11th 2019, genetics diagnosed alice with an extremely rare genetic disease (only 200 ppl worldwide) called Chediak-Higashi Syndrome. The prognosis is heart breaking ( from https://medlineplus.gov/ency/article/001312.htm
Outlook (Prognosis).
Death often occurs in the first 10 years of life, from long-term (chronic) infections or accelerated disease that results in lymphoma-like illness.)
We are currently working on starting weekly infusions to help boost her immune system. And our immunologist is sending us to Duke in NC to see a specialist about the CHS. In the mean time we have been fit for her medical stroller and are waiting to find out the out of pocket expense. Her PT wants her to get a walker, so we'll have another deductible to meet for that. A lot has happened and i recommend following her journey at www.faceboom.com/babyalicelittlechiariwarrior. For More info. This new diagnosis has devastated our family and youe continued support is very appreciated, and your love is felt
January 2nd, 2019. Alice is finally home from her 7 day hospital stay. She is on 24/7 oxygen now. She has a gj-tube now. She is going to need a lot of safety and functional changes to make things easier for her and for us. Please read her most current update. Please share her story and encourage others to as well. Donate a $1 or 2, it adds up! Its been a long, long 6 months and we are in serious need of a miracle.
12/7/18 Update: These past few weeks we have watched our little girl grow in so many ways, and regress in so many others. In addition to the very severe central sleep apnea, she is once again refusing to eat orally. She's lost a pound in the past week. So her GI decided to return her to 20 hour continuous feeds, with 4 hours off at night. For 20 hours she'll be attached to her pump every day. And every day i will be terrified of pulling out her button, again. This is not the life that she deserves but it was the one she was dealt, so together as a family we will get through this, as we've gotten through the past 5 months. Please, keep baby Alice in your thoughts and prayers.
11/13/18 Update: Its only been 20 days but so much has happened. Please read the Updates section or follow along on her Facebook Page . Most recently, she had a sleep study over the weekend, and failed miserably. She did have mild obstructive sleep apnea. Now she has severe central sleep apnea - which means her brain is telling her not to breath, and for her its on average 25 times an hour. We don't know if this means her Chiari is "back" or if she'll need another brain surgery soon. But for now, this Monday, she is being fitted for a mask, having her overnight CPAP test to make sure it actually helps, and then she'll be on oxygen whenever she sleeps or naps. We need more equipment and more supplies (including her gtube supplies). Please consider donating to this sweet princess, who is way to little and innocent to be going through so much. Thank you from the Jasper Family.
Baby Alice is an amazing little girl who truly is a warrior at heart. Alice was diagnosed with Chiari Malformation, a rare brain defect, at 9 months old. On August 23rd 2018, at 11 months old, she underwent a decompression brain surgery, where a 25mm herniation was removed. She did amazing, and surprised everyone by coming home just 2 days after surgery! In many ways, she has made great progress. At 13 months, she finally crawled about 3 "steps" for the first time! She enjoys "dancing" to music, watching new faces and the expressions people make, and trying to move in any way her little body will allow. Unfortunately, It is likely she'll have more brain surgeries in the future, as it is only a treatment and not a cure. In October, Alice was also diagnosed with an immune deficiency disease, making her risk for serious infections so much higher and the likelihood of future hospital visits inevitable. Alice is still unable to safely swallow and is therefore still gtube fed as well. She has 14 specialists and a list of diagnosises longer than my arm, but every day she has a smile on that beautiful face of hers. She truly has the most loving and lively spirit! So we are asking for support to help provide the medical care Baby Alice needs and deserves. This fund will help with her outstanding medical bills, her current medical care, and her monthly supplies. The Jasper Family appreciates your continued support as they learn to navigate their lives with Alice's new special needs. Follow her journey at
Baby Alice - Little Chiari Warrior
Click for
Daytime Show Clip on Baby Alice.
April 1st. Duke has decided to get their bone marrow transplant team involved. They want Alice seem immediately, we are just waiting on final approval from insurance. We have also talked with the NIH (national Institute of health) and they are very interested in her unique representation of Chediak Higashi Syndrome. For now, we are in limbo, and hanging on by a prayer.
March 27th 2019 - Alice is going to be talked about on the Daytime Show today on channel 8 in the Tampa bay area - 10amEST! Please follow her story at Baby Alice
March 20th 2019
Today we got a call from Cincinnati, and it's been hard to accept. They decided since her numbers are borderline, and bone marrow transplants are so risky (20%-30% pass because of BMT complications) that at this time, they do not want to more forward with the bone marrow transplant, yet. They want to wait and watch. They want to see her every 6 months to do all of their testing each time, and if her numbers reach a certain threshold than they will move forward. They did do HLA testing to have that completed, and Abigail, our 5 year old, is a 6/6 match. So when/if we move forward, Abigail will be her donor. The plan for now is to do weekly $10,000 infusions to try and boost her immune system. They want her isolated at home as much as possible, away from people, especially sick ones. If at any time she shows symptoms of going to the accelerated phase, they will move forward with the BMT. Honestly, im not that happy with the plan. I feel like we are gambling with her life by just watching and waiting for her organs to begin to fail. So we have decided to go to Duke in NC, to a specialist our immunologist recommended directly from the start, for a second opinion. This is not a decision to make lightly, so we want to ensure whatever the treatment plan is, it'll be the best option for her. I spoke with Duke today and although they need to verify insurance before scheduling us, they did say she would likely be seen in mid-April. So now it's back to planning another road tip. Currently, I am completely and utterly overwhelmed. Any and all help is appreciated. Its getting harder and harder to stay positive...March 10th, 2019.
We leave in less than 10 hours for her first appointment with the Bone Marrow Transplant team at the Cincinnati Children's Medical Center. Its a 921 mile trip, and I'm driving up solo with both Alice and big sister Abby. Alex is currently flying to Arizona, and he'll fly into Ohio on Wednesday for her appointment, before flying back out to Arizona that night. There was so much to plan and organize, and there still is so much to do. I feel so overwhelmed with the driving, with the appointment, with my questions and fears, im just emotionally spent. We have a payment due on Wednesday for her out of state appt. I dont know how much it is, but I know we are STILL (after Everything this year!) $1800 away from her out of pocket max. Im honestly to scared to call them and find out what we owe, and im just hoping they'll be willing to work out a plan. Its so nerve wrecking, having to plan and organize and deal with everything by myself. I need help... Alice needs help. Her appt is Wednesday at 1:30pm. Please keep us in your thoughts and prayers during this very difficult week. Thank you to everyone who is getting her story shared, and to everyone who is able to donate! Remember that even $3 is a huge help and can add up fast!!
February 26th, 2019 the decision to move forward with a bone marrow transplant was given. We are traveling from Tampa, FL to Cincinnati OH to see their top rated pediatric bone marrow transplant team. Our initial visit will be in the next week or so, we should get an exact date tomorrow. Then we have to wait for a match to be found. The ONLY way to donate is to actually register with www.bethematch.org - its not the blood type that must match, but a blood protein called the HLA. Once registered with Be The Match, if you match with Alice that would be amazing, but you may also be matched with any number of other very deserving people. So please keep in mind that donating is a very serious, and selfless, thing to do. And theres no guarantee that you'll even be donating to Alice.
Our campaign with gofundme has been very quiet lately. I feel so often like we ask for so much, and are so blessed in some ways, that its hard for me to reach out and ask for more help. But we need it, and so I hope by putting it out there we will continue to receive support. We love you all and thank you for everything.
On February 11th 2019, genetics diagnosed alice with an extremely rare genetic disease (only 200 ppl worldwide) called Chediak-Higashi Syndrome. The prognosis is heart breaking ( from https://medlineplus.gov/ency/article/001312.htm
Outlook (Prognosis).
Death often occurs in the first 10 years of life, from long-term (chronic) infections or accelerated disease that results in lymphoma-like illness.)
We are currently working on starting weekly infusions to help boost her immune system. And our immunologist is sending us to Duke in NC to see a specialist about the CHS. In the mean time we have been fit for her medical stroller and are waiting to find out the out of pocket expense. Her PT wants her to get a walker, so we'll have another deductible to meet for that. A lot has happened and i recommend following her journey at www.faceboom.com/babyalicelittlechiariwarrior. For More info. This new diagnosis has devastated our family and youe continued support is very appreciated, and your love is felt
January 2nd, 2019. Alice is finally home from her 7 day hospital stay. She is on 24/7 oxygen now. She has a gj-tube now. She is going to need a lot of safety and functional changes to make things easier for her and for us. Please read her most current update. Please share her story and encourage others to as well. Donate a $1 or 2, it adds up! Its been a long, long 6 months and we are in serious need of a miracle.
12/7/18 Update: These past few weeks we have watched our little girl grow in so many ways, and regress in so many others. In addition to the very severe central sleep apnea, she is once again refusing to eat orally. She's lost a pound in the past week. So her GI decided to return her to 20 hour continuous feeds, with 4 hours off at night. For 20 hours she'll be attached to her pump every day. And every day i will be terrified of pulling out her button, again. This is not the life that she deserves but it was the one she was dealt, so together as a family we will get through this, as we've gotten through the past 5 months. Please, keep baby Alice in your thoughts and prayers.
11/13/18 Update: Its only been 20 days but so much has happened. Please read the Updates section or follow along on her Facebook Page . Most recently, she had a sleep study over the weekend, and failed miserably. She did have mild obstructive sleep apnea. Now she has severe central sleep apnea - which means her brain is telling her not to breath, and for her its on average 25 times an hour. We don't know if this means her Chiari is "back" or if she'll need another brain surgery soon. But for now, this Monday, she is being fitted for a mask, having her overnight CPAP test to make sure it actually helps, and then she'll be on oxygen whenever she sleeps or naps. We need more equipment and more supplies (including her gtube supplies). Please consider donating to this sweet princess, who is way to little and innocent to be going through so much. Thank you from the Jasper Family.
Baby Alice is an amazing little girl who truly is a warrior at heart. Alice was diagnosed with Chiari Malformation, a rare brain defect, at 9 months old. On August 23rd 2018, at 11 months old, she underwent a decompression brain surgery, where a 25mm herniation was removed. She did amazing, and surprised everyone by coming home just 2 days after surgery! In many ways, she has made great progress. At 13 months, she finally crawled about 3 "steps" for the first time! She enjoys "dancing" to music, watching new faces and the expressions people make, and trying to move in any way her little body will allow. Unfortunately, It is likely she'll have more brain surgeries in the future, as it is only a treatment and not a cure. In October, Alice was also diagnosed with an immune deficiency disease, making her risk for serious infections so much higher and the likelihood of future hospital visits inevitable. Alice is still unable to safely swallow and is therefore still gtube fed as well. She has 14 specialists and a list of diagnosises longer than my arm, but every day she has a smile on that beautiful face of hers. She truly has the most loving and lively spirit! So we are asking for support to help provide the medical care Baby Alice needs and deserves. This fund will help with her outstanding medical bills, her current medical care, and her monthly supplies. The Jasper Family appreciates your continued support as they learn to navigate their lives with Alice's new special needs. Follow her journey at
Baby Alice - Little Chiari Warrior
