This is a picture of my incredibly strong best friend Shannon and her amazing son Thomas. Tommy was born in August, 2005 with a rare genetic disorder called Wolf-Hirschhorn syndrome. To meet him is to fall in love immediately! Despite the many medical challenges that face him every day, such as his feeding tube, significant developmental delays, risk of life-threatening seizures, hearing and vision loss, to name a few, he lights up every room he enters! The outlook for children with this disorder can be extremely grim. However with the help of his nurse and unbelievable mother, his proud, loving and supportive father Tom and beautiful big sister Ella, Tommy has surpassed the doctors expectations for him. He is able to walk, has expressive verbal abilities and knows exactly what is going on around him. His sense of humor and loving nature make him irresistible to his nursing staff, therapists, family any anyone else lucky enough to be around him.
Raising a child with special needs is something no one else except the family can truly understand. And when God blessed Shannon and Tom with this wonderful child, they welcomed the challenge with open arms. However, the stress of such a life takes its toll. In October 2012, Shannon was diagnosed with Myasthenia Gravis, a disorder similar to Multiple Sclerosis. She was forced to stop working for months as she struggled to gain control of the physical symptoms affecting her daily life. She has had to undergo two surgeries since her diagnosis and currently maintains a regular routine of intravenous blood treatments which are physically taxing and extremely expensive.
Shannon and Tom are the most incredible parents I know. Their love of family and the strength they exhibit inspires me daily. It is for these reasons and my love for them I have established this website. Asking for help does not come easy for any of us at times and this family asks for nothing but love and support. However, with mounting medical expenses, lack of a consistent second income and expenses of homeownership I know they are in need. Therefore I ask you to please find it in your heart to help this extraordinary family with any donation you can afford. Thank you and God bless!!