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Jennifer Fairchild

Fundraising for Wyatt V's Freedom Concepts Discovery Series

Wyatt has limited mobility and if he was to receive a supportive bike he would be able to have a fun way to get his legs moving. Wyatt loves being outside so for him to have an activity to do that allows him to move will be good for his development. 

Wyatt has limited mobility and if he was to receive a supportive bike he would be able to have a fun way to get his legs moving. Wyatt loves being outside so for him to have an activity to do that allows him to move will be good for his development.

MAR
17

When mother nature gives you a 70 degree day in March you take a nap outside

MAR
12

Going for his ride in grandpa's ATV collecting sap on a cold michigan day

4 days left. Hopefully Wyatt can hold on to his place. We wouldn't even have a chance if it wasn't for our amazing family and friends and even strangers that don't know us. Thank you everyone we really appreciate all the support.

MAR
7

Baby Wyatt in January 2020 in ER getting his first MRI

Wyatts journey continued. After finally getting wyatts infantile spasms to go away he still was having many different forms of seizures and the neurologist said it looks like his infantile spasms are morphing into another rare seizure disorder known as Lennox-Gastaut syndrome. Along with being seen by neurology he was also being followed by a Geneticist to see if they could find the cause of his horrible seizures. After many test coming back with no identifiers he ended up having a Whole exome sequencing test done were they break done every single part of his genes. That test came back with a rare inherent gene TBCD. The gene was first noted in 2016 so it is completely under diagnosised. When Wyatt first got his diagnosis we were able to connect to 3 other families from all around the world but going on 2 years into his diagnosis we've connect with 6 more families. The most recent medical publications from 2021 show there is a total of 43 documented cases of people with TBCD gene. Unfortunately many of those children have passed away. Knowing wyatts diagnosis I promised him I will give him the best life I can for the time we have together. Tomorrow is never promised so we live for today and take each day as it comes.

MAR
6

When cousins come over and help find the hidden egg next

3/6/22 Wyatt is currently in #3 and also has raised $555. Thank you to all the wonderful supporters of my son.

MAR
5

Wyatt enjoy a warmer michigan day today

Wyatts long journey continues after failing 2 rounds of high dose steroids and another pharmaceutical medicine we decided to give the medical ketogenic diet a try. I wish it was as easy as just changing his food but unfortunately he had failed swallow studies so to do the diet transition safety he had to have a feeding tube placed. May 2020 when Motts children hospital started preforming surgeries again wyatt was one of the first to be seen. It was an emotional time since the visitor policy only allowed one parent to be there. He made it through the surgery with no complications and started the new diet of a ketogenic formula. The new formula made him puke multiple times a day so we switched to a peptide blend that was easier to digest which reduces the puking but he still had horrible reflux. After a few months on the diet his infantile spasms stop but he still had an extremely abnormal EEG. After stressing about not receiving the formula delivery on more than one occasion and Wyatt still having digestive pain i took the jump into slowly introducing him to real blended food. To this day wyatt is still on the ketogenic diet but he is is feed real food through his gtube now. TBC

Within the first day of registering wyatt he has made it to the top 10 in a contest that started 2 weeks ago. Thank you to everyone that has taken the time to vote and share his story.

Use whatever we have as tools to work on skills

Helping in the kitchen

Working hard hold his head up

Wyatts journey continued. After a few weeks of ACTH injection Wyatts spasms stopped and we had hope for a brighter future. But unfortunately once we started to wean the medicine his spasms returned :( so the next medicine for him to try was vigabatrin and before he could even start that medicine I had to sign tons of legal papers that I understand that could cause blindness and brain changes (scary thoughts for a baby). We started that medicine in the hospital until we had some on hand at home. When we got home Wyatt ended up having a fever and a new form of seizures he never had before so back to the hospital again. It was confirmed he had a rhinovirus (common cold) which triggered him to start having focal seizures which meant more medicine and iv medicine to calm his brain. Also requiring him to be on oxygen for a few days. After he spent a week fighting off the virus he didn't require oxygen and was able to go home. After 3 months of trying vigabatrin he was still having spasms so we had to decide the next steps to try which generally would be easy decision to try to add a steroid back in but it is May 2020 in a middle of a pandemic and steroids weaken your immune system. We decided that it was best to go ahead and try the steroids again but unfortunately that meant Wyatt couldn't be around his dad who was an essential worker and leaving the house. It was a long month with limited support for Wyatt never wanted to not be held. Unfortunately like the first round of steroids the spasms stopped while on the high dose but returned when started to wean. More of his story coming later tonight.

Good morning when Wyatt wakes up I can't wait to tell him he only needs 12 more votes to have a chance at winning a new bike.

MAR
4

Since I quickly registered I left out important part letting people know Wyatt's story. Wyatt was born a healthy full term baby. He was hitting his milestone until 4 months we noticed he couldn't hold his head up. He was seen by a neurologist and was referred for farther testing. Right before he turn 6 month I noticed we was doing a weird movement with his arms and since he already had a neurologist I sent her the video not sure if it was concerning. She called me right away and told me to bring him to ER to get an EEG she suspected he had infantile spasms a rare form of epilepsy in infants. Within an hour he was confirmed he did have infantile spasms and was admitted to the hospital to start a high dose steroid (acth) which I had to injected into his thighs twice a day for a month. That is the start of his long journey and I'll tell more of it tomorrow. Thank you everyone who voted

Within the first hour of registering Wyatt he is halfway to his 50 votes goal but if they keep rolling in maybe he can get the most votes and automatically win a bike (one can dream)

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Fundraising Progress
$2,000 raised of $3,300 goal
 

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