Last December, 23 brought you the story of Mya Jackson, now a 10-year-old Holy Cross Catholic School student was diagnosed with NF2 (Neurofibromatosis). Mya has endured surgeries and treatments that would be hard on anyone, much less a young girl. Mya has “NF2”, one of two kinds of the illness. Type 1 is also known as the “Elephantman disease”, and is very noticeable as the tumours grow on the exterior of the body, while type 2 the tumours grow internally. Mya has over 30 tumours in her body all on nerve endings which makes them extremely difficult to operate on, the majority of which are in her brain and on her spine. The worst of these are currently her vestibular schwannomas, residing on cranial and vestibular nerves. These tumours cause hearing loss, vision loss, facial paralysis, diminished gate/ loss of balance.
She has had a major brain surgery to remove a 5cm x 5cm x 10cm mass attached to the bottom of her frontal lobe which changed her personality and has also created some difficulties with learning which we work hard to help her overcome as best we can. Mya goes to on average 2 appointments a month to see her many doctors such as ophthalmologists for her vision loss, neurologists for the tumours which are now causing hearing issues and have forced her to wear hearing aids and will force another surgery in the future, ears nose throat specialists again for various ailments tumour related, she has a psychiatrist at CHEO we see regularly as part of the disease and life experiences have caused an extremely high level of anxiety.
Now the family are asking friends and neighbours to collect tabs from pop cans, which they can use to raise funds to buy Mya a wheelchair. People who want to contribute can drop off pop tabs at Krown Kemptville.
Mission for Mya is a Facebook page that Mya’s mother, Tanya, set up in an effort to raise awareness for this rather obscure disease. Tanya’s wish to spread awareness through this site turned into a community rallying behind her and her little girl. Craig Gerlach, Mya’s step-Dad, has been very impressed by the positive effects the Facebook page has had already:
“Because of the obscurity of NF2 (1:30,000), those afflicted, and their families can feel very isolated and alone. Tanya’s wish to spread awareness through this page turned into a community rallying behind her and her little girl, and what a wonderful community it has become!”
Mya is undergoing a series of chemotherapy treatments as part of her on-going battle against the effects of NF2. Craig and Tanya have to plan ahead, however, always trying to keep one step in front of the illness:
“Should the chemotherapy treatments not have the desired effect for Mya, we will be looking at surgery for her, and at the moment, the most qualified surgeon with the highest success rate is in Paris, France.
“1 in 3000 people have NF1 and 1 in 30,000 have NF2. That’s a lot of people in our neighbourhoods who deal with these issues on a day to day basis. Please support us and these charities by bringing awareness and helping to find a cure when you can by taking part in our events and fundraisers, as well as discussing and researching the effects of NF. Most of all, appreciate your own health and the ability to help those who need it.”
Mya’s Facebook page is at Mission for Mya THE FIGHT AGAINST NF2