Maddie Lane Brewer is an angel on earth. A happy baby of 18 months, she delights everyone she sees. Maddie was diagnosed in July with Angelman Syndrome (AS).
Angelman Syndrome (AS) is a neuro-genetic disorder that occurs in one in 15,000 live births, says the Foundation for Angelman Syndrome Therapeutics (FAST) website. AS is often misdiagnosed as cerebral palsy or autism. Characteristics of the disorder include developmental delay, lack of speech, seizures, and walking and balance disorders. Individuals with Angelman Syndrome will require life-long care.
“We knew since birth something was not right, but the doctors told us you can’t compare children and to wait a year,” said Jena Brewer, Maddie’s mother.
“Maddie doesn’t know that there is anything wrong with her,” said Brewer. “It has been so crazy, but a blessing in a way. She makes people smile, makes us realize what life is. She has a happy very angelic personality and is always smiling and laughing.”
Maddie is the daughter of Brent and Jena Brewer of Lake Wales and joins a sister, Carly, age 6.
Because of the care that Maddie needs, Brewer, a pharmacy technician for Walgreens for eight years, has taken time off under the Family Care Act for a year to care for her daughter. Of course, that is time off without a paycheck.
Maddie takes physical and occupational therapy and speech Monday, Wednesday and Friday each week attending Our Children’s Academy on Burns Avenue. She doesn’t talk or walk, so when she took six steps last week assisted “that was a major accomplishment,” Brewer said. “Statistics say she may walk by age 7. If she learns to speak six words, that would be an accomplishment.”
The family is trying to get what Jena Brewer calls a “gait walker” for Maddie that would help with her stability and balance in trying to stand and walk.
Maddie takes medication every night to try to prevent seizures. She just came through a session of fever and many seizures just a couple weeks ago, Jena said. Right now the medication is paid for by medical insurance, “but I will lose my insurance in January.”
The little girl has endured MRIs, EEGs and countless blood work at the All Children’s Hospital in Tampa. She has Strabismus of the eye (a misalignment of the eyes, inward or outward, can be cured with vision therapy or surgery).
“Her left eye goes to the left severely,” Jena said. “She will need surgery. A patch is being used to build up the muscle before going that route. She does really good. She is so little.”
Care is seven days a week, 24 hours a day.
“She needs me at all times,” Jena said. “Going from a typical kid (her daughter Carly) to one with a disability is overwhelming.”
Support has come from Jena’s and Brent’s families, but they all work. Parents of children with the syndrome offer support for one another.
“It’s an awesome community in Tampa and Lakeland that is very supportive.”
A doctor in Tampa has been doing research on Angelman Syndrome and “has found a cure for the disease in mice,” Jena said. “He is doing human trials and just finished them in June and July, but we have not heard any of the results. The FAST is behind the resource as a nonprofit hunting for a cure.
“On Dec. 6, a FAST Angelman Syndrome summit is planned in Chicago and all parents who have children with Angelman Syndrome are invited. That is when the results of the human clinical trials are to be reported publicly,” Jena said.
To help to raise funds for FAST so research can continue toward that human cure, a fundraiser is being held in Lake Wales on Nov. 17 by the Lake Wales Moose Lodge 2391 at the lodge at 3601 E. State Road 60.
Beginning with a breakfast from 8-11 a.m. the $6 breakfast will be served buffet-style. An auction is planned from noon to 3 p.m., live local music from 3:30-7 p.m. and raffles from noon to 7 p.m. Dinner will be barbecue chicken or pork Boston butt, cole slaw and baked beans.
“We hope to raise $10,000,” said Joe Settle, trustee for the Lake Wales Moose Lodge who is the heading up the fundraiser. “Over the years we have held 12 to 14 fundraisers for Moose members and for needs in the community and probably have raised $100,000.”
Some of the auction items will include a hunting trip to Ohio, an animal mounting service, air boat trips from Camp Lester on the Kissimmee River, a light meter from Lowe’s, a drill from Home Depot, lots of local merchants’ wares, beauty salon donations, and items donated by Moose Lodge members.