By Alexis Shoemaker
On April 22, 2007 the Lee Family welcomed a beautiful little girl into this world. Handpicked and deliver no doubtingly by the hand of God himself. A miracle meant to inspire and led. The pregnancy and delivery was ideal and Jocelyn was born seemingly healthy. She was full of happiness and spread that happiness to everyone that had the honor of meeting her and being a part of her life. But a few months after birth it became apparent to her parents that Jocelyn was not developing the way a normal child was supposed to. Optimistic and based on little experience, the Lee’s were hopeful that their little girl was just moving at her own pace was not yet ready. However, at her 4 month check-up reality came crashing in on the Lee Family, and after doctors ran many test and addressed Jocelyn’s extremely low muscle tone, they concluded that Jocelyn if fact had Spinal Muscular Atrophy or SMA, a motor neuron disease. Spinal Muscular Atrophy (SMA) is a motor neuron disease. SMA occurs when there is an alternation in the SMN1 gene, in which the SMN protein that plays a critical role in the survival of nerve cells in the spinal cord is significantly reduced; the spinal cord is responsible for muscle contraction. These motor neurons affect the voluntary muscles used for activities such as crawling, walking, head and neck control, and swallowing. In other words, as the muscles do not function as they are meant too, they become smaller and weaker, thus resulting in atrophy. SMA is known as an autosomal recessive disease, meaning that those with the disease must have two copies of the altered SMNI gene. It is a relatively common “rare disorderâ€: approximately 1 in 6000 babies born are affected, and about 1 in 40 people are genetic carriers. (www.fsma.org and DNA Learning Center).
Can you imagine if your child was one 1 of the 6000 babies born with this horrible disease. Many families would have given up, crawled into bed, and let the enormous grief associated with this disease consume them. But not the Lee’s. Jocelyn is no longer with us those dear to her physically, but spiritually she has never been more present. Jocelyn was a caterpillar trapped in her cocoon, but in the end was transformed into a beautiful butterfly. There is not one person they she touched that does not carry the mark of love she left behind. Rabindranath Tagore once said, The butterfly counts not months but moments, and has time enough. Jocelyn was here only a short time, but the legacy she accomplish was uncomparable.
The Lee family now faces the same journey with their son Nathan, but one thing they took from their brief, but wonderful time with Jocelyn is that everything happens for a reason and there is an opportunity behind every challenge to make a difference and change the lives of others; that is exactly what their children have done for them and others. No amount of pain and grief could undo the love and precious memories that have followed their birth. Therefore, the Lee’s are in the of process to setting up a foundation in Jocelyn’s honor to help other families facing SMA, but in the meantime they host yearly fundraisers that help fund and support families with SMA in need. One annual event is held right in our back yard here in Lake Royale and is rapidly approaching and we need your support. On April 26, 2014 at 12:00pm, the Lee Family and their many supporters, family and friends will be holding the 6th Annual Jocelyn Page Lee SMA Golf Fundraiser at the River Gold and Country Club located at 170 Clear Water Road in Louisburg, NC 27549; Entry fee will be $50 per person or $200/foursome and Lunch is included with registration. Individuals and businesses can also become tournament or hole sponsors. Tournament Sponsorship is $250 and Hole sponsorship is $100. For more information and other donation options please click on the link http://www.jocelynpaigelee.org/events/golf. Please spread the word and help carry on Jocelyn’s amazing legacy.
