My Story

Christina Leighton's Story

Christina was born on 11-2-88 a healthy 8lb 10 1/2oz baby. At the age of 3 she was diagnosed with a rare genetic disorder called MPS I-Hurler-Scheie syndrome. MPS I, along with six other MPS diseases is a mucopolysaccharide disease that is relentlessly progressive and potentially fatal.

Journal

Wednesday, June 27, 2007 12:18 PM, CDT


It has been 4 1/2 years since Christina left our lives, and I have always wanted to develop another site for her, (our original site was removed after we switched internet servers.) Christina was such a joy to be around, she was a sweet child with such a good disposition. Whenever I talk to people about her they always remember her positive attitude and her lovely enduring smile. She enjoyed life to the fullest and was a real trooper when it came to having surgery, which was a common event in her life. She loved to go camping, swimming and her favorite place to visit was Disneyland. She got to do all these things just months before she left us.

Christina endured many surgeries during her short life with us. Her surgeries consisted of ear tubes (several sets), hernia repairs, removal of tonsils and adnoids, dental surgeries for fillings/removal of teeth, VP shunt, insertion of a port-a-cath, back surgery to correct Spondylolithesis (which placed her in a body cast for 3 months) and mitral valve replacement. Christina's eye sight had deteriorated over the years and her next surgery would have been a corneal transplant. In addition to this she was in the first Enzyme Replacement therapy in 1998. Unfortunately, she passed away prior to the FDA approving the therapy. She was proud to be a participate and was able to tell people how much it helped her.

At the time of her death Christina was in the 8th grade. She was in a resource special education program. Christina had a 1:1 Instructional Assistant to help her with writing, reading (because of her eye sight) and modifying materials. Her favorite classes were Art and Math. It was at this age that I began to notice the change in the way her peers interacted with her. Christina was very hesitate about me contacting a counselor, but after I spoke with the counselor a very nice girl who shared the same interests as Christina developed a friendship with her.

We all miss her dearly, and never is there a day that we don't think about her.

Julie


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