Baby Myles' Liver Transplant Fund

$31,541 of $50,000 goal

Raised by 241 people in 18 months

Sweet baby Myles arrived on June 23, 2016. We were so excited to complete our family with our second son, and a new baby brother for our then 14 month old son Jace. Never did we dream they would be faced with the tragic news on Monday August 8, 2016 that Myles needed to be immediately addmited to Sunrise Childrens Hospital for testing. Never could we have imagined the trials we were about to face. The next couple weeks were spent at sunrise hospital getting a ton of test to try and diagnose Myles condition, including a liver biopsy. But with no success Myles would have to be flown to UCLA for an exploratory surgery called an intraoperative cholangiogram, and the main suspect was something called, Biliary Atresia, a rare, life-long and life-threatening childhood liver disease that affects 1 in 16,000-20,000 infants shortly after birth. There is no known cause and no cure. This disease is not hereditary. In order for infants to survive they must undergo a major life-saving operation called the Kasai  Procedure shortly after diagnosis, this operation is used to hopefully avoid a Liver Transplant, but in the majority of cases the Kasai Procedure fails. Therefore Biliary Atresia is the leading cause of liver transplantation in children as the majority of those diagnosed with BA end up needing a liver transplant. A liver transplant is not a cure, it too brings its own life-long problems. Those diagnosed with this disease will be in and out of hospitals all their lives having operations, procedures, tests and scans to monitor their disease and ultimately keep them alive. The exploratory surgery went well and Myles had his Kasai procedure done on August 22nd  2016. The surgery and recovery went well but sadly Myles Kasai procedure already failed.
Since then Myles has been in and out of the hospital with fevers, infections, cholangitis, and his most recent procedure, a broviac catheter, which is a long term central line (IV in his chest) for IV nutrition to help him gain weight. This process of feeding him bypasses the Biliary system and goes straight into his veins so he is absorbing every calorie he is receiving. Therefore he will gain weight very quickly. The downside is that it is very hard on the liver. He also has a NG feeding tube through his nose into his stomach to feed him 20 oz of formula each day as well if he will not eat it by mouth. Myles is currently listed on the pediatric transplant waiting list at UCLA Hospital with a P.E.L.D score  of 19 and is eligible to start receiving offers for a new liver. He is getting more sick everyday and when the time comes for him to get his transplant I will be going on medical leave at my job without pay and going with Myles to UCLA to stay in the hospital for the approximate month he will need to be admitted for recovery. After he is well enough for discharge Myles and I will need to live locally ( most likely in the Ronald McDonald house if there is space available) for 3 months for weekly checkups and to make sure his body doesn't reject his liver.  Although this has been the hardest endeavor our lives, we have such an amazing support group and Incredible family and friends who help us daily and generous people who have helped us stay afloat and pay our bills since Myles first began his journey with BA. Please continue to pray and share this for us we will need all the love,support, and hope we can get it has only just begun, but my sweet boy "Smyles" is a fighter and we will never give up on him. Thank you all again for all the love and support.

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Praise God!!! He has answered our prayers. Myles results for PTLD (lymphoma) are negative. They have narrowed his breathing issues down to some type of rare bacterial infection. The plan from here forward are to attack it with extreme doses of steroids. Thank you to all of you have been praying for my sweet boy. I can't say it enough. Glory to God!! This is the best news I have gotten all year long!
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Myles is being moved to the ICU and they are going to put him to sleep in the morning to do a laryngoscopy on him. All the tests for ear nose and throat viruses that could be causing his breathing problems have come back negative and they can't figure out what's going on. Will let everyone know when I find out more.
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Well I guess I spoke too soon, Colorado is concerned about Myles' health and they are flying him there tonight. We have a room waiting for him already. I don't have any news other than he's going to be getting an endoscopy and they are concerned for him enough to fly us there. Please be patient with me while awaiting results sometimes it takes days to get answers. But I will do my best to keep everyone as updated as possible thank you again to everyone we love you all.
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So Myles hemoglobin levels were very low when he got admitted to the hospital last night. They decided he needed a blood transfusion which he got this morning, but they are concerned that something is going on inside him so he's going to get an endoscopy done tonight. Don't know how quickly we will get the results from that but we will keep everyone posted thank you so much for all the love and prayers. We love you all.
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Read a Previous Update
Kirsten Canup
17 months ago
2
2

I know I don't have much but I want you to know I'm there for you and your beautiful family! Best wishes! Love you ♡

+ Read More
Diana Colgrove
17 months ago
2
2

Precious!!! Glad to see him smiling after what he's been through. Keeping everyone in my prayers.

+ Read More
Judy Lethcoe Harris
17 months ago
2
2

Such a happy baby!

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Mark Kelsch
17 months ago
2
2

So glad to see the little guy smiling!! God Bless him!!!

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Edra Hernandez
18 months ago
2
2

Taylor I'm so sorry to hear that he is not doing well, maybe his body has to adjust to everything he has been thru. we are all praying for him. and my heart goes out to you.

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Mark Kelsch
18 months ago
2
2

Thoughts and prayers go out to you and your family, we are praying for Baby Myles!!!

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Taylor McMillan
18 months ago
2
2

Thank you so much everyone for all the prayers, donations, and shares. You have no idea what this means to us ❤

+ Read More
Stacy Larsgaard Toms
13 months ago
1
1

If you need anything, anything at all, please let me know. UCLA is about an hour away from where I live. I can help!

+ Read More
Kelly McMillan
15 months ago
1
1

Baby Myles needs to get on the list for a liver transplant. ASAP. He is O negative. This is one organ you can donate part of and yours will grow back . This will probably save Myles life!! Jordan and Taylor have been encouraged to find a donor themselves. Please spread the word.

+ Read More
Mark Kelsch
15 months ago
1
1

Praying for baby Myles!!

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Deanna Best Green
16 months ago
1
1

SENDING GOOD THOUGHTS AND PRAYERS!

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Paige Bernhardt
1 month ago

That's wonderful news! We're hoping he continues to get stronger and beat whatever comes at him. Though he be small he is mighty! - Paige & Nancylee

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Paige Bernhardt
2 months ago

Sending you healing energy . I know that's kinda bullshit but that's all I got. Sending it!!!!!!

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Maria Kittyle Chavez
8 months ago

Gosh you are so Brave and your family and doctors awesome. I pray for you to heal and for the doctors to work their magic sweet one. Do not give up.

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Diana Colgrove
9 months ago

Yeah!!! God is good!!!

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Karin Collins
9 months ago

Your family is in my prayers. Praying for healing for your sweet baby and strength for your family.

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Diana Colgrove
9 months ago

AWESOME NEWS!!!

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Diana Colgrove
9 months ago

AWESOME news!!! Praying all goes well!!!

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Tori Wilson
11 months ago

I'm thinking of you and your family. (If you need a donor, I'm O+ and more than willing to get tested.)

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Jennifer Cotto
11 months ago

Praying for your family I'm sure Myles will come out on top. I've been where you are with the exact same diagnosis. Unfortunatly my ending wasn't so happy but Myles will get through this believe in the doctors and take advantage of all the help that comes your way. May God bless your entire family xoxox ❤

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$31,541 of $50,000 goal

Raised by 241 people in 18 months
Created August 14, 2016
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$2,500
Cch Pounderkone
2 months ago
1
1

..to my amazing cast and crew thank you for sharing your love and respect all through this year..in your honor I am supporting these special people ..MYLES.. whom I'm privileged to represent on your behalf..believe me they will all be truly grateful.. so consider yourselves blessed!!

JH
$50
Judy Harris
2 months ago

Merry Christmas guys! Bless that little fighter!

$50
Anonymous
4 months ago
Kirsten Canup
17 months ago
2
2

I know I don't have much but I want you to know I'm there for you and your beautiful family! Best wishes! Love you ♡

+ Read More
Diana Colgrove
17 months ago
2
2

Precious!!! Glad to see him smiling after what he's been through. Keeping everyone in my prayers.

+ Read More
Judy Lethcoe Harris
17 months ago
2
2

Such a happy baby!

+ Read More
Mark Kelsch
17 months ago
2
2

So glad to see the little guy smiling!! God Bless him!!!

+ Read More
Edra Hernandez
18 months ago
2
2

Taylor I'm so sorry to hear that he is not doing well, maybe his body has to adjust to everything he has been thru. we are all praying for him. and my heart goes out to you.

+ Read More
Mark Kelsch
18 months ago
2
2

Thoughts and prayers go out to you and your family, we are praying for Baby Myles!!!

+ Read More
Taylor McMillan
18 months ago
2
2

Thank you so much everyone for all the prayers, donations, and shares. You have no idea what this means to us ❤

+ Read More
Stacy Larsgaard Toms
13 months ago
1
1

If you need anything, anything at all, please let me know. UCLA is about an hour away from where I live. I can help!

+ Read More
Kelly McMillan
15 months ago
1
1

Baby Myles needs to get on the list for a liver transplant. ASAP. He is O negative. This is one organ you can donate part of and yours will grow back . This will probably save Myles life!! Jordan and Taylor have been encouraged to find a donor themselves. Please spread the word.

+ Read More
Mark Kelsch
15 months ago
1
1

Praying for baby Myles!!

+ Read More
Deanna Best Green
16 months ago
1
1

SENDING GOOD THOUGHTS AND PRAYERS!

+ Read More
Paige Bernhardt
1 month ago

That's wonderful news! We're hoping he continues to get stronger and beat whatever comes at him. Though he be small he is mighty! - Paige & Nancylee

+ Read More
Paige Bernhardt
2 months ago

Sending you healing energy . I know that's kinda bullshit but that's all I got. Sending it!!!!!!

+ Read More
Maria Kittyle Chavez
8 months ago

Gosh you are so Brave and your family and doctors awesome. I pray for you to heal and for the doctors to work their magic sweet one. Do not give up.

+ Read More
Diana Colgrove
9 months ago

Yeah!!! God is good!!!

+ Read More
Karin Collins
9 months ago

Your family is in my prayers. Praying for healing for your sweet baby and strength for your family.

+ Read More
Diana Colgrove
9 months ago

AWESOME NEWS!!!

+ Read More
Diana Colgrove
9 months ago

AWESOME news!!! Praying all goes well!!!

+ Read More
Tori Wilson
11 months ago

I'm thinking of you and your family. (If you need a donor, I'm O+ and more than willing to get tested.)

+ Read More
Jennifer Cotto
11 months ago

Praying for your family I'm sure Myles will come out on top. I've been where you are with the exact same diagnosis. Unfortunatly my ending wasn't so happy but Myles will get through this believe in the doctors and take advantage of all the help that comes your way. May God bless your entire family xoxox ❤

+ Read More
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