A fundraiser that took place last month to help with research for a rare bleeding disorder proved to be a success.
For the month of April, Jill Bryar set out to raise money and to bring awareness to hemophilia.
Her son, Manny, 2, was diagnosed with hemophilia, a rare bleeding disorder in which the blood doesn’t clot normally. This means Manny may bleed for a longer time than others after an injury. Those diagnosed with hemophilia may also bleed internally, especially around the knees, ankles and elbows.
April 17th marked ‘Word Hemophilia Day’ and Jill had the idea to host a fundraiser called ‘Manny’s Mission’ where people could buy raffle tickets for a number of prizes.
There were a number of door prizes up for grabs including box seat tickets and $300 food and beverage voucher for eight people to any Rebels game next season, an iPad, a $200 gift card for groceries from Sobey’s South and spa packages, among others.
Jill’s initial goal for the fundraiser was to raise $1,000. The amount raised totaled $12,475.
Proceeds from the fundraiser will go towards the Hemophilia Research Million Dollar Club.
“I didn’t even know what to expect,” she said. “We got a few big donations right off the bat and so we raised our goal to $3,000 and then $5,000. Three days before the end of the month we had raised close to $8,000 and I was really hoping we could make it to $10,000.
“I feel pretty overwhelmed and shocked. We are so thankful to everyone who participated.”
Jill said initially she had thought to sell raffle tickets to family and to friends.
“People took a real interest in Manny and in hemophilia and they were really excited to help out. We are really grateful.”
Meanwhile, Manny was diagnosed with hemophilia at a very young age.
“When Manny was about five months old he started getting these bruises all over his stomach. We just weren’t sure what they were and we went to the doctor a few times and the doctor said it was just because he’s moving on the floor and on toys. But we knew that wasn’t normal,” said Jill. “He went for a blood test and he kept bleeding all night long from being poked. The next day he woke up and his arm wouldn’t fit into his shirt because it was so big.
“They rushed us up to the Stollery Children’s Hospital and they diagnosed him with hemophilia.”
Those born with hemophilia have little or no clotting factor, which is a protein needed for normal blood clotting. There are several types of clotting factors. These proteins work with platelets to help the blood clot. The two main types of hemophilia are A and B. Hemophilia A is caused by a mutation occurring in the F8 gene and hemophilia B is caused by a mutation in the F9 gene. Most are diagnosed with hemophilia A.
One in 10,000 boys are born with hemophilia type A each year, said Jill.
After Manny was diagnosed with hemophilia he started once a week treatments where he would be infused through his arm or foot intravenously with the clotting factor he is missing.
He now has an intravenous access device under the skin on his stomach that helps to administer the factor easier. He has treatments every second day.
Manny is just like any other child, but Jill said they have had to make adjustments.
“Boys will be boys and they will climb on things, jump off the couch and we can’t completely stop him from doing those things, but we are definitely more careful. Any bump if he hasn’t been infused recently we have to assess and see how serious it is, determine if we have to infuse now, or if he starts limping it could be an internal bleed,” she said. “Anything we do now like going to the playground or going to a birthday party we have to be a little more careful. If we have something to go to I will infuse him earlier in the day. Once he goes to school it will be really hard because I won’t be there with him.
“You have to be careful but you don’t want to put them in a bubble either. We now treat to prevent bleeds instead of treating a bleed.”
As for next year, Jill said she will plan another fundraiser for the month of April.
efawcett@reddeerexpress.com
