In the November edition we shared the story of a local mother suffering from an aggressive version of MS.
After draining her bank account and accepting the generosity of the community which arrived through a variety of means including a bottle drive, a hockey pool and direct donations funneled through a Go Fund Me page, Jenn Puk travelled to a California clinic to receive a new stem cell treatment that clinical trials have indicated offers improvements in the quality of life among some patients.
Puk’s expenses did not end when she returned home. Because her treatment was delivered in the US, the medication prescribed by the US doctors is not covered by OHIP, so her medical expenses continue. No matter, she says. The results have been life-changing, and well worth the $15,000+ US price tag.
It is the small things that one takes for granted that have the most powerful impact. She has ditched her wheelchair, and was able to walk unassisted up the hill at TASS to watch the Crestwood Football team in its quest for top honours at OFFSA. She can wiggle her toes, tap her feet to music, tilt her head back in the shower to wash her hair and dress herself, so she has regained some independence.
Kelly Armstrong is another young Millbrook mother suffering from MS. She explains that her condition is slightly different from Jenn’s and her symptoms are not as severe, a situation she attributes to some extent, to her access to a wide variety of drugs. As a teacher, Armstrong has a generous drug benefit plan which has allowed her to try different treatment programs during the early stages of her illness, which she believes has helped slow the progression of her condition. Without it, she would find it difficult to finance her $1700 monthly prescription bill. She is hopeful that as more MS patients like Jenn secure successful alternative treatments in other jurisdictions, the Ontario health care system will recognize the more promising ones and begin to offer MS patients more options.
Last month Jenn and her friend Krista Gallimore joined the Lions at their annual Christmas dinner, where Fred Marshall made a special presentation to the mother of two. Marshall’s son also suffers from MS, and he acknowledged the challenges that accompany this pervasive disease. Puk was presented with a donation of $4,000 from the organization, an amount she tearfully explained represented the balance she had removed from her savings account in November to finance her trip to the California clinic. She was overwhelmed by the generosity of this group, and she thought the dinner was pretty amazing, too.
Through this experience, Puk has been introduced to other MS patients who find that sharing notes about their experience and talking to someone who understand their condition is reassuring. She is grateful for the support she has received from across the community and beyond, and welcomes anyone who would like to talk to her about her experience to contact her at firstname.lastname@example.org. KG