Miracle Merrick's Quality of Life

$13,475 of $50,000 goal

Raised by 104 people in 39 months
Merrick was diagnosed with Spinal Muscular Atrophy, SMA, type 1, at 8 weeks old.  Essentially, it is the childhood form of ALS.  It is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat or breathe.  It is the number one genetic cause of death for infants.
In order to ensure our precious little miracle man, Merrick's quality of life, adaptive equipment is necessary.  Ranging from special wheel chairs to communication technology to a conversion van, there will be many expenses along the way.
Any funds will go toward making Merrick's life easier and more fulfilling, but please don't forget to continue to pray for us, too!
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So it has been some time since our last update! A lot has happened in this last year and we are very excited! So this time last year Merrick was accepted to the ENDEAR trial at Duke University where he was undergoing the newly FDA approved SPINRAZA drug. This trial was a double blind trial so we do not know if he ever received the drug. This past August Biogen announced that they will be closing the trail and submitting to the FDA the results and every child that was in the program will be accepted into the Extended Access Program, at which point he will actually receive the drug. This was super exciting for us! So we where racing money to get a wheelchair accessible van for our travels and to be able to get Merrick to his appointments and last year Chive Charities answered our call and donated a new Braun Ability Dodge Caravan, this has been a HUGE Blessing!!! As some of you may know living with a child or family member with life long disabilities and major medical issues adds a lot of extra cost and some things are just not covered by insurance. So we are changing this from Prayers 4 Merrick to a Merrick/Akins family quality of life fund, which will assist with the extra medical cost that insurance will not cover, special adapted toys that he can play with, special equipment that insurance won't buy(therapy table) and things that we can all do together as a family. This summer in June we are heading down to Orlando Florida for the Annual SMA conference and it is not a cheap trip so we ask for your assistance for this trip, so we can connect to other families and learn more about this horrible disease. Thank you to everyone who has already supported us and thank you to those who continue to assist. You are all truly a blessing!
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Thank you everyone for your continued prayers and support, we are so blessed. Merrick is currently in the hospital again he was admitted last week to the NICU at Walter Reed and then a few days later transferred to Children's National in Washington DC. He has been doing pretty well and we are getting a new home ventilator and a BIPAP mask to provide better flow for his lungs. We are also conducting "Sprints" which are time periods where he is off the ventilator and mask! We are trying to get him off for a total of 8 hours a day, right now he is at about 4 hours off and he does really well we. We are super excited about this and we get to see his beautiful face and smiles! Once we get to 6 hours off the doctors are going to start contacting other hospitals that are conducting drug and gene therapy trials to get our little man on this list to get these life altering and saving drugs/therapies. We are also in contact with the equipment people and they are working with insurance to get us an adaptable stroller so he will be able to sit up and see the world vice just laying around all day, this makes us so happy. It looks like we will be discharged from the hospital on Tuesday as long as everything goes well.
Our pets have made it safely to us and we are very thankful and happy to have them home. Our household goods and furniture arrive on Monday! We will get to sleep in a real bed soon!
So when we get the adaptable stroller we are going to need a way to transport him in it, I have been looking into the mobility minivans and they are very expensive a new van cost around $70,000. This is our top need at the current time, he does not handle his car seat very well and was one of the reasons we had to get admitted again, so this minivan would be a great help. I know our God will provide and heal our family. Please continue to pray for our family, pray for strength, peace, healing, hope, patience, wisdom, guidance, and that he will provide for what our needs are. Thank you everyone for your continued support.

God's perfect creation! My Angel!
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So the little man is doing well, thank you everyone for your continued support and prayers. We are currently moving into the next phase of our life which will include bringing Merrick home!!! We will have nursing care at home for 16-18 hours a day, so having a strange person in the house that much will take a while getting used to.
I have raised our goal, we are going to need a wheel chair accessible vehicle which a new van with the modifications cost about 75K and with a single income that is not feasible, but we can get a decent used one for around 50K.
If you know us we love our little fur babies, we are still trying to get the pets to us from Italy and the Military is not helping out getting us our family back, it is going to cost us about $3000 to get them to us. If you can help please help, if not please keep us in your prayers, they help just as much.
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Thank you everyone for the continued support, we are truly blessed! Merrick continues to show us smiles and he still loves the 49ers, even though they are having a rough time as well. Every morning we are greeted with his wonderful smiles and we thank God for every day we have with him. We have placed an application to rent a house in Germantown which is near Bethesda, and we hope to find out midweek if we get the house. Once we are able to move into the house we can start making preparations to bring him home. Please continue to pray for our little man and our family as we move forward, and please continue to share this and our story with as many people as possible. There is no cure for SMA... the leading genetic cause of death in infants.
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$13,475 of $50,000 goal

Raised by 104 people in 39 months
Created September 1, 2015
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$50
Anonymous
17 months ago
RG
$50
Rebecca Gillin
17 months ago

Praying for your family during this very sad time.

AP
$100
Amanda Patricio
17 months ago

Love you!

$100
Anonymous
17 months ago
$100
Anonymous
21 months ago
$100
Anonymous
21 months ago
$300
Anonymous
22 months ago
1
1
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