A Change for Evan - The family journey to liver transplant

Evan was born with MSUD and underwent a liver transplant on Halloween 2014. In July he went into rejection and required re-transplant in November 2017.

My grandson Evan is now 14 months old. Evan was born with a very rare metabolic disorder called Maple Syrup Urine Disease. Basically, his body cannot metabolize protein the right way. The protein breaks down into toxins that can damage his brain if not treated correctly. When Evan was a newborn we did not know this was happening and my daughter Kelly, her Husband Matt and their 5 year old daughter

Elizabeth almost had to say goodbye as quickly as they said hello. Evan was just 7 days old when he was transferred by life-flight to the Neonatal Intensive care unit at UIC in Chicago and underwent treatment. Evan has been faced with many challenges throughout his short life. He’s had 3 surgeries, 5 hospital admissions, countless illnesses, physical therapy, feeding therapy, and several doctor appointments every month. Through all this he has been able to stay on track developmentally. Evan's diet is made up of a special medical formula and a limited amount of fruit and a few types of vegetables. Recently, he was sick with a stomach virus and because he was unable to keep the formula down he had to be admitted to the hospital. His liver wasn’t working well and his immune system was compromised. It took Evan over a week before he could tolerate his formula and several weeks after that before he was completely recovered from that illness. I created this page because Evan is in need of a liver transplant. A new liver for Evan means a new beginning and a new life. A new liver is essentially a “cure” for Evan and his Maple Syrup Urine Disease. He will be able to eat everything a child should be able to eat. He will be able to have a donut, drink a glass of milk, enjoy a happy meal with his sister, eat a piece of chocolate… things you and I take for granted. We won’t have to worry about whether the next common childhood illness will cause him to be hospitalized or not. We won’t have to fear brain damage from the buildup of toxins in his blood during illness. He will have the freedom to eat many different foods and be able to live a normal life, something every child deserves. This new liver would be the greatest gift ever. Please consider viewing the fundraising site http://achangeforevan.org/ to contribute a monetary donation to help with the medical costs associated with a liver transplant. We want to thank you for all your love, support, and prayers since Evan was born. We ask that you continue to pray for our little "sweet" boy so that he may receive a new liver and start the next chapter of his life.

05/19/2021

Photos from A Change for Evan - The family journey to liver transplant's post

05/26/2018

When you work in healthcare you quickly learn not to mention certain things out loud i.e: patient names, negative or poor outcomes etc in fear that as soon as you do the person will show up on your patient census, or that which was mentioned will happen, etc. I have such a fear of repeating the past that I'm afraid to report on the wonderful things happening in the present. I'm scared to get too comfortable with the amazing medical progress I see happening or to brag about how far we have come since where we were about this time last year. I am even anxious about going into these summer months remembering how quickly our lives went from perfect to completely upside down in a few short weeks. But, today I reflect on the positive after this week's clinic visit which confirmed everything we were seeing in Evan. I am so incredibly thankful to God for protecting my son and for bringing forth the family who so graciously gave my son the gift of life when their child's was snatched away by tragedy. It is because of that family, because of that one heroic boy that I have been able to enjoy the last 6 months with my very much alive and well son, Evan. We weren't sure we'd have this time with him, and being completely honest I was certain we wouldn't. I have never been so happy to be so wrong about something. Instead, we have had so many more snuggles, hugs and kisses, fits and arguments, messes of cars and trucks all over the house, and even a 5th birthday to celebrate. Evan is thriving. As we celebrate his 6-month post re-transplant, we are reminded how truly blessed we are for everyday we get to spend with our children, with our family and with eachother. We thank you all for the love and support you continue to show us and pray God bless each of you. Enjoy your holiday weekend, rain or shine won't stop us from doing just that. 💓

02/05/2018

Glad to say that Evan has been doing GREAT!
Two and a half months post transplant and Evan was cleared by his Liver Team to return to preschool today. To say he was excited is an
understatement. He has been bored staying home with mom and dad waiting for sis to get home from school. And by the sign outside his classroom it appears the teachers and classmates are happy Evan is back

12/03/2017

Big Christmas Party today at the house. Santa Clause and Mrs Clause were here. Santa brought toys for the kids. Festivities included face paint, cookie decorating and pictures taken by photographers. Ronald McDonald even made an appearance but Evan wouldn't give him a high 5. It stinks Liz and Mom had to miss the fun because the Limestone Lightning are busy winning a basketball tournament in Pekin, IL.

12/02/2017

Question: Which one is not like the rest?

Answer:
The guy in the blue shirt. Everyone else is a
SUPERHERO
Evan introducing his Dad to his Justice Legue
Friends

12/01/2017

Evan found the computers in the 4th Floor Library. Playing some educational games on NickJr. We may spend the rest of time here on this floor. Figure its better than Youtube videos or Russin Gangster game Evan downloaded on phone. (He reinstalls it when I get rid of it)

12/01/2017

Hanging out in Living room on the transplant floor. The electrician showed up to fix the outlets. And Evan put himself to work by holding a flashlight for him.

11/25/2017

Evan's first time walking since surgery yesterday. Today he walked down a hallway and back. The walking causes alot of pain but Evan is strong, tough and motivated to get back to 100%.

11/25/2017

Evan has made some progress over the past few days. On Thanksgiving morning he was moved out of PICU to the General Floor. He has been fairly happy. He was starving he hadn't had any food since Saturday. Yesterday morning he was cleared to eat foods. So he started with a slice of pumpkin bread. His sister also bought him a Hersey Chocalate Bar(Evan's favorite) and gave it to him. Evan said to Liz "Thank you, my sweet lilttle sissy"when she handed it to him. They also started Evan on oral pain meds and stopped the IV pain meds other than the PCA pump
We again want to say thank you to everyone praying for our Evan.

11/22/2017

Evan seems to be feeling alot better today. He was in alot of pain yesterday, they increased his pain meds a little bit today. This video shows the results. They also talked about possibly moving Evan out of the PICU to the floor soon. It is amazing how much progress he has made 2 days post transplant. Thank you for all the prayers for our lil guy. We are blessed

Photos from Photography by Heather Ball's post

09/18/2017

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A Change for Evan - The family journey to liver transplant

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