Advice for new mito family

[Guest guest]

My sister's baby has an as yet undiagnosed mito disease. He is 15

months old, but looks like he's 3 months old. He weighs 13 pounds,

has absolutely no appetite, and has severe developmental delays. He

suffers from metabolic acidosis and hypotonia, among other things.

He just developed seizure activity last week. But he's cute and

sweet and extremely tolerant. His name is Ari - short for

Aristotle. He's teaching us a lot.

Financial problems are compounding the little guy's health

problems. My sister is on Passport (Ky. Medicaid) and she is in the

process of getting an out of state referral so the baby can be taken

to NY or Atlanta for another muscle biopsy. Getting the procedure

paid for is only part of the problem. Does anyone know of any

organizations that offer financial assistance of any kind for things

like plane trips, housing, etc.?

This is all quite overwhelming. I've been reading postings from

this site and it's great to see the support you are all willing to

give in light of the struggles you are facing. Thanks for being

there!

Cyndy

Louisville, Kentucky

[Guest guest]

Hi Cyndy,

Welcome to the group. I recommend a web site- www.bravekids.org

it is a site featuring many organizations that could help you. There are different organizations that provide air transport for medical appts. also.

I am not familiar with them, but I know one of them is named Angel Flight.

There are resources out there, and the internet is a great place to find them.

Brave Kids would probably help in finding these resources. We will keep your family in our prayers. Sincerely, Joni

Advice for new mito family

My sister's baby has an as yet undiagnosed mito disease. He is 15 months old, but looks like he's 3 months old. He weighs 13 pounds, has absolutely no appetite, and has severe developmental delays. He suffers from metabolic acidosis and hypotonia, among other things. He just developed seizure activity last week. But he's cute and sweet and extremely tolerant. His name is Ari - short for Aristotle. He's teaching us a lot.Financial problems are compounding the little guy's health problems. My sister is on Passport (Ky. Medicaid) and she is in the process of getting an out of state referral so the baby can be taken to NY or Atlanta for another muscle biopsy. Getting the procedure paid for is only part of the problem. Does anyone know of any organizations that offer financial assistance of any kind for things like plane trips, housing, etc.? This is all quite overwhelming. I've been reading postings from this site and it's great to see the support you are all willing to give in light of the struggles you are facing. Thanks for being there!Cyndy Louisville, Kentucky Please contact mito-owner with any problems or questions.