Raising Awareness for Tuberous Sclerosis

The first year of her life was normal, but then the seizures began.

Alexandra Spear has Tuberous Sclerosis, a condition that has affected approximately 50,000 people in the United States. Spear, 9, is developmentally equivalent to a three- or four-year-old, according to her mother Denise.

Spear is on the autistic spectrum and is not potty trained, and she has a tuber on her brain that doctors need to keep a close eye on.

"She suffers from seizures pretty much every day," Denise Spear said. "We have to handle them on a case-by-case basis."

Three years ago, the Spears attended a walk for Tuberous Sclerosis in Syracuse. Denise and Robert decided to bring the idea to Long Island. Two years ago, the Spears raised $22,000 for the cause, and last year, that number leaped to over $90,000.

"It is so overwhelming," Denise Spear said. "I can’t even explain it in words. You just feel so along watching your child go through this. We are so gracious. We can’t say enough to all of the people for their love, support and prayers."

When the tuber was was noticed on a sonogram, one doctor recommended that Denise terminate the pregnancy, because there was a chance Alexandra could have had other problems. The Spears sought a new doctor and kept the pregnancy going.

The prognosis for Alexandra is unknown, although the Spears hope that "there will be a cure for this one day."

Alexandra's four-year-old brother Brendan has been a big supporter of his big sister.

"We actually call him the younger older brother," Denise Spear said. "He’s very good. If Ally’s seizing, he will come and get us."

Brendan also goes to Little Village in Seaford with Alexandra, and the teacher says that Brendan acts like "a mother to the children," according to Denise.

The Spears are working around the clock to prepare for two upcoming fundraisers. The third annual Tuberous Sclerosis Fundraiser will be held on Aug. 11 at 6 p.m. at Jackie Reilly’s Restaurant in Bethpage. Admission to the fundraiser, paid at the door, is $10. There will be live music, food, 50/50 raffles and penny auctions. Jackie Reilly’s is located at 3964 Hempstead Tpke. in Bethpage.

The Spears are also preparing for the second annual “Step Forward To Cure TSC” walkathon at Wantagh Park on Sept. 24 at 11 a.m. Walkathon participants can register on the day of the event or online at www.stepforwardtocuretsc.org.

For more information on Tuberous Sclerosis, and to learn how you can donate, visit Alexandra's website.