Help Lil' Kev Beat SMA2

Meet Little Kev

Kevin John Garry Verch was born on November 7, 2019 and just celebrated his
first birthday. Kevin and his family are members of the Algonquins of Pikwakanagan First Nation in
Pikwakanagan Ontario, and Golden Lake Ontario. For the first six/seven months Kev was full of energy,
kicking, clapping and reaching key milestones for his age. The closer Kevin came to his
first birthday we were noticing that he was beginning to lose strength in his lower limbs and trunk area.
Kevin has been to a paediatrician and since things progressed is now set up with CHEO, under the care of
their key neurologist.  His blood tests came back as positive for SMA which is Spinal Muscular Atrophy,
Type 2.

 

SMA is a rare genetic disease affecting 1 in 10,000 children that causes loss of
nerve cells called motor neurones in the spinal cord.  SMA attacks the muscles
causing weakness and atrophy (when muscles shrink). Since Kevin’s muscles are weakening and getting smaller, it is affecting his developments such as unable to
crawl, walk, stand and losing arm movements. When someone has SMA they are missing the SMN1 gene which tells your brain to use your gross motor skills.
There is a drug called Zolgensma that is needed for Kevin. This drug will give
Kevin the missing SMN1 gene. Zolgensma has just been approved by Health
Canada but has no coverage through OHIP (there is no coverage for Type 2 SMA). It is a one-time only treatment for the cost of $2.8 million.

This treatment can give our lil’ Kevin the fulfilled life of being able to walk and
build muscles that he needs. The neurologist has explained this is the best option
for Kevin to reach his milestones. Kevin is almost 14 months old and would need
to receive this treatment before the age of 2 (24 months), this deadline is urgently trying to be met between now and November 2021.

 

Please join Kevin’s family and community in raising funds for Kev’s treatment and ongoing medical expenses. Every donation, every share will make all of the
difference to give him the best chance at being able to walk and have a normal,
long and healthy life. 

Donations

 See top
  • Anonymous 
    • $100 
    • 11 d
  • Allison Orr 
    • $5 
    • 11 d
  • Matthew King 
    • $150 
    • 11 d
  • Eric Vallillee 
    • $25 
    • 11 d
  • Anonymous 
    • $100 
    • 11 d
See all

Fundraising team: Lil' Kev's Warriors (4)

Jess Verch 
Organizer
Raised $13,886 from 176 donations
Dana Pearce 
Team member
Raised $6,235 from 70 donations
Joanne Pearce 
Team member
Raised $1,445 from 7 donations
Alexandra Short 
Team member
Raised $170 from 5 donations
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