Kennedy is a quick witted and fun loving 5 almost 6 year old who is wise beyond her years! She enjoys swimming, going to school, and playing with her family and friends. At 6 months of age Kennedy was diagnosed with Collagen-6 Related Dystrophy (COL6-RD), a rare disorder with a wide range of symptoms including, but not limited, to proximal muscle weakness, joint contractures, rigid spine, and respiratory insufficiency.
Since birth Kennedy has shown her strength and resiliency. This year Kennedy recovered from her second spinal surgery in the spring. She also had her third ICU stay due to RSV and pneumonia in November, followed by a short hospital stay for Norovirus late spring. She continues to excel despite these medical obstacles day in and out.
Each year, the tradition has become to host an Oktoberfest themed combined fundraiser and birthday party to celebrate another year with our amazing girl. Our main goal is to spread awareness and give back to this small but VERY mighty CMD community. The most impactful way to do this, is by raising funds for research, for those just like Kennedy who have been impacted by this specific diagnosis. We are proud to say that last year's money raised went towards funding two separate research grants!
Currently, there is no cure for this COL6-RD. However,researchers are on the cusp of finding and testing new therapies that could work towards slowing down the progression of symptoms. The Tenacity of Hope , a documentary, gives an inside look into our CURE CMD community. We invite you to visit the link to gain more knowledge and see the importance for research.
Youtube link – http://curecmd.org/toh