Four-year-old Brooke Aubuchon is home from New York City and all her family can now do is wait for the telephone call.
Medical staff at New York City's Weill Medical College of Cornell University probed and tested the Innisfail youngster, who is dying from Batten disease, for an entire day last week during her four-day visit to the city with her mother Robin Brand and family friend Carla Fox.
Brand said everything went well, and that doctors and all staff during the testing were professional and thorough.
She said on Jan. 25 Brooke had an MRI, eye exam, spinal tap and blood work. Brooke was also videotaped walking, and recorded to see how well she could grab items.
Batten disease is a rare, fatal, inherited disorder of the nervous system. Some of the early symptoms include clumsiness, or stumbling, as well as mental impairment, worsening seizures, and progressive loss of sight and motor skills. Brooke, whose brother Alexander died of the same disease 14 months ago, was first diagnosed last October.
ìThe tests were done to make sure she is safe for the clinical trial,î said Brand. ìThey said they would have an answer in two to four weeks. ìBut even if she is not accepted for the clinical trial they want to see her in 18 months.î
Outside the tests, Brand ensured her dying child enjoyed some quality moments in New York City. They took a walk in Central Park and then went to the zoo. Mother and daughter also found a ìbigî toy store, as well as one that offered the finest candy for Brooke.
They arrived home Sunday. In the meantime, daily living with Batten disease continues for Brooke and her family while they hope for the best.
ìRight now I am just waiting by the phone,î said Brand. ìIf they do call they could want us to come tomorrow or the next day.î
However, she said the family is also preparing for the worst, that Brooke will not be accepted. If that happens the family will try other clinical trials that are underway in the United Kingdom and San Francisco.
ìI'm waiting to see what happens here and then we will go from there,î said Brand.
Meanwhile, citizens in the Innisfail community and surrounding region continue to be generous to the family. More than $15,000 has been raised for the family but if Brooke is accepted in a clinical trial the costs will continue to climb.
Jodi McCutcheon, a Red Deer mother and longtime friend of Brand, has raised $3,435 through the creation of her sock monkey dolls. She has also raised an additional $950 through online auctions. McCutcheon, who can be reached at 403-755-4542, will also be at this weekend's peewee hockey tournament at the Innisfail Arena when another sock monkey will be auctioned off.
Friends of the family have also stepped up with a local fundraiser, which will include a silent auction, during the evening of Feb. 1 at Innisfail's Fox and Hound Sports Pub.
"Right now I am just waiting by the phone."Robin Brand
