Help Sloane Fight MPS I

Megan and Shaun welcomed their beautiful daughter, Sloane Ainsley, into the world on December 18th, 2016. She had lots of dark hair and a sweet smile!

Sloane grew into a spunky baby girl that loved to go to the beach and play with her dog, Padre.

She was happy and seemed to be healthy and developing well, but Megan is a pediatric physical therapist and noticed small things here and there that concerned her. Mom advocated for Sloane to get some tests based on her concerns and when Sloane was 8 months old they received the devastating diagnosis: Sloane had Mucopolysaccharidosis type 1 otherwise known as MPS I or Hurler's Syndrome. This disease is caused by the absence or malfunctioning of lysosomal enzymes needed to break down large sugar molecules.  Without this breakdown, unwanted material is stored in the organs, causing severe problems in the body.

Shaun and Megan were heartbroken as they were told their healthy and energetic baby actually had this incredibly rare and terrible disease. Untreated, MPS I can lead to joint deformities and stiffness, cognitive impairment and developmental delays, hearing and vision loss, enlarged organs and respiratory problems. The life expectancy in untreated MPS I is 5 to 10 years. Megan and Shaun were horrified and grief-stricken but knew that they had to do whatever they possibly could to help Sloane battle this disease and improve her prognosis. 

They immediately sprung into action, contacting doctors, nurses, specialists, receptionists, leave coordinators, insurance companies, employers, family and friends to determine a plan for treating Sloane. Her team of doctors determined that the best course of action was to perform a bone marrow transplant, in conjunction with enzyme replacement therapy. The goal of the BMT  is to provide a continual supply of normal enzyme from the donor's healthy blood stem cells. This can halt the progression of damage to the brain, vital organs and other body tissues. 

Thanks to their tireless advocacy, Megan and Shaun were able to quickly arrange for testing and eventual treatment at  the University of Minnesota Masonic Children's Hospital. UMMCH is widely regarded as being the nationwide leader of successul bone marrow transplants for Hurler syndrome in the United States. Following successful transplant, patients typically do not suffer further cardiac deterioration and the accumulated material in the liver, lungs, and marrow slowly disappear. Vision and hearing may improve post-transplant, as well. In addition, the patient's cognitive function will typically stabilize.

Time is of the essence to perform these life-saving treatments. The sooner they can undergo treatment, the better the outcomes for Sloane. She has already been so brave and undergone blood work and other testing to find a bone marrow match. Shaun and Megan planning to travel to MN as early as mid-Sept for testing to determine if Sloane is ready for a transplant. If all goes well, they will hopefully be returning to MN in October for the transplant and remain there for 4-5 months, while Sloane receives more treatment and is closely monitored.

Megan and Shaun are working with a patient advocate to determine if their insurance can cover this treatment. If they cannot, they may face a delay in treatment and will be looking at thousands and thousands of dollars in medical costs. And even if the transplant is (hopefully) covered, Shaun and Megan will need to cover the cost of airfare, transportation, housing, food, diapers and baby items for Sloane!! And this is just for the 4-5 months they will be undergoing treatment. Going forward they will also need resources to help with lost wages at work, insurance payments and ongoing treatment for Sloane.

Megan and Shaun are our friends and two of the most generous, kind and strong people that we know. Sloane already has their resilient spirit and sense of humor! If any family can get through this nightmare and thrive, it is them. Please help us support this amazing family and donate what you can...any little bit will truly help. There is no cure for MPS I but we know that with fast treatment and the love and support of their community, Sloane and her parents will have tremendous hope for her future!!!

With love and thanks,
Friends of Megan and Shaun

Organizer and beneficiary

Tai Victoria
Pittsburgh, PA
Shaun Skelton

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