My grandson, Belaham William Alan Flett, who was born August 26 this year, has been in hospital since 3 days after birth. He had a very high ammonia level in his blood (2700- normal is below 100). After spending about a week in PICU , he was diagnosed with a rare genetic disorder call OTC:
Ornithine transcarbamylase (OTC) deficiency is a rare X-linked genetic disorder characterized by complete or partial lack of the enzyme ornithine transcarbamylase (OTC). OTC is one of six enzymes that play a role in the break down and removal of nitrogen the body, a process known as the urea cycle.
To put it simply, Belaham is unable to process the protein needed to grow. He is currently on a continuous feeding tube, and has required several blood tranfusions each week.
The diagnosys requires the transplant of his LIVER ASAP. He was flown by Air Ambulance from Winnipeg to Toronto where he is currently at the SICKKIDS hospital awaiting a donor liver - deceased or living.
He is on the deceased donor wait list. Not sure what his current MELD score is but it was 29.
With a living donor organ transplant, he would not need to be wait-listed. We are hopeful someone will come forward in this case.
Unfortunately, the costs for a qualifying Donor Travel to Toronto for testing leading to transplant surgery present a roadlbock to this little boys lifesaving operation.
Your donation would go towards the Potential Donor travel / accomodation costs prior to and after transplant surgery.
These FUNDS are needed immediately to help us find the matching DONOR we need to save my grandsons life.
Please donate any amount you can spare for this lovely child.
DEBIT CARDS are now accepted.
This page will be kept up to date so check back often to see how our progress.
Thankyou for your Donation.
- Ethel Straker
- Bonnie & Mike Dmyterko
- Lyndon Froud
- Bruce Gunderson
- Sherri Baldwin
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