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The family of Brynleigh Higgins of Batavia says they knew something wasn’t right since she was 5 months old.
“We have been in and out of the hospital with her,” says her grandmother Edna Higgins.
About this time last year, she started having trouble eating.
“She would start to gag, shake, throw up, and have trouble breathing. We immediately contacted the doctor, but they did not know what was going on. They just told us to keep an eye on her. She continued to do this until she completely stopped eating pureed foods. We were unable to get her to even take a bite without gagging and throwing up. She was at the ER a number of times; they thought that she was having seizures. We were advised to not even try to give her food, only formula. She then started to do the same thing with her formula. She would take a little and then stop. She would do different mouth movements, gag, and throw up. She would stop eating. They hospitalized her several times for dehydration and, as they called it, a reset.”
Brynleigh has had a lot of tests done to try and figure out what to do.
“So far, they told us that she has a heart murmur, two hyper-tender lungs, a cyst in her brain that doesn’t seem to need surgery yet, developmental delays, she wears SMO braces, and she has to wear a Speedo suit.”
Grandma Higgins says the list of doctors continues to grow.
“She has a whole team of doctors that she sees, including a cardiologist, pulmonologist, aero digestive team, gastroenterologist, allergist, occupational therapist, physical therapist, behavioral health specialist, ENT, neurologist, ophthalmologist, audiologist, speech therapist, dermatologist, nutritionist, and geneticist. To be honest, I believe there are a couple I might have missed. I actually counted she has a team of 22 specialists she sees right now.”
Now 19 months old, Brynleigh was recently diagnosed with Hereditary Alpha Tryptasemia syndrome (HATS), a rare genetic disorder which can trigger inappropriate immune responses, leading to a range of symptoms.
“She just tested positive for Hereditary Alpha Tryptasemia within the last month and a half. This disorder is really new, and many doctors don’t know about it. Only 5 % of the population has this disorder.”
This past month Brynleigh was hospitalized for what they called a medical food challenge because she is still only on formula.
Brynleigh was also just diagnosed as being level 3 autistic and nonverbal about 2 weeks ago.
Her pediatrician has now referred her to Boston’s Children’s Hospital so that she can get the treatment she needs as the doctors here in New York have not been able to help her.
Brynleigh and her family traveled to Boston this past Wednesday for the first time.
“They said she needs urgent care. They are putting in urgent referrals for aerodigestive, feeding, development delays, and speech. As soon as the urgent referrals are completed, her appointments will be set up.”
To keep up with the costs associated with Brynleigh’s treatment, her family has decided to hold a fundraiser this coming Sunday, November 24th at the ARC Community Center at 38 Woodrow Road in Batavia. The fundraiser will run from 1:00p.m.-5:00p.m.
A 75-inch Samsung Smart TV will be raffled off at the benefit. There will also be basket raffles, gift certificates and gift cards. There will be pizza, pop, water and coffee. Tickets are $10 each or 3 for $25.
The donations will go towards Bryleigh’s medical bills and transportation to Boston. Her care and treatment will at least be a week.
“All her care will be through Boston, when they start doing her care and treatment, she will have to be there for some time.”
Basket raffle donations ? Dates & times ?
Contact Edna Higgins in comments on story in Facebook post.