Brooks family thankful for response
POWHATAN POINT – A poker run held Aug. 30 to benefit 1 1/2-year-old Aubrey Brooks was a huge success and the family wanted to express their gratitude to the Ohio Valley for coming out and showing their support.
”We were able to raise a good bit of money,” mother Nichole Brooks said. ”We had about 440 to 450 people show up. It was a wonderful turnout.”
Aubrey Brooks was diagnosed with Congenital Erythropoietic Porphyria or CEP. It is a condition that causes extreme photosensitivity to sunlight, as well as other related skin and internal problems.
The Brooks family is waiting patiently for a call that a match has been made in order to get Aubrey a bone marrow or cord-blood transplant that, if successful, will cure her of CEP and its related symptoms.
In order to do that, Aubrey had to undergo an HLA-typing test which can cost anywhere from $5,000-$15,000. The money raised from the benefit poker run will go a long way in helping ease that financial burden.
It will also help the Brookses when they eventually travel to Salt Lake City, Utah for the transplant. They will need to stay, at minimum, 100 days while Aubrey recovers and will need to come up with the many assorted costs of temporarily moving halfway across the country.
Despite taking place during the daylight, Aubrey was able to be in attendance briefly at the poker run so everyone could see her.
A large tent was erected and steps were taken to ensure she wasn’t in the sun. Because of her condition, it was the most people she had been around at one time.
”She was a little overwhelmed, but she did good,” Nichole said. ”Her sister was down there with us and she put Aubrey on her shoulders and danced around with her.
”A lot of people came over to see her.”
A big help at the benefit was the proceeds from the winning 50-50 raffle ticket were donated back to Aubrey.
”The winning ticket, No. 3553, didn’t have a name on it other than Aubrey’s with it written to make sure to donate the money back to her,” Nichole said. ”Actually, we looked at a lot of tickets and most of them either had her name listed or that the money should be donated back.”
While the Brooks family is thankful for the help they’ve received, they too want to do their part to help anyone else going through the same experience with CEP.
That’s why Nichole and Aubrey recently attended a dermatology convention in Pittsburgh.
”They asked me to bring Aubrey. There were about 75 doctors there that came in and looked at her and it helped them in their studies because most have never seen someone with her condition,” Nichole said. ”One of the doctors gave a presentation on her while we were there.”
Nichole did receive a bit of good news recently when she learned that Aubrey’s younger sister, Abbagayle, does not have CEP. While she is a carrier for the disorder, she was spared being inflicted.
Two separate blood drives were also held in order to provide people the opportunity to sign up for the National Bone Marrow Donor Registry for free. Normally, signing up costs $100.
At the first blood drive, 44 units of blood were donated and 26 people that donated also had swabs done to be placed on the registry. The second drive saw 32 people donate and 21 swabs taken.
To read more about Aubrey, go to www.aubreybrooks.com. Her mother has developed a website to update people about Aubrey’s condition and how’s she’s coming along.
Hughes can be reached at firstname.lastname@example.org