Kian's Story
The first time I saw Kian Hudson was in October, 2005, when I visited him and his Mom, Aleeshia on Duke’s Pediatric Bone Marrow Transplant Unit. They were celebrating not only Kian’s first birthday but the determination that he was ready for discharge!
Kian and his mom were here from Connecticut. Kian had recently been diagnosed with Hurler’s, a genetic disorder that is one of many under the MPS heading. WebMd describes MPS disorders as follows:
Mucopolysaccharidoses (MPS disorders) are a group of rare genetic disorders caused by the deficiency of one of ten specific lysosomal enzymes, resulting in an inability to metabolize complex carbohydrates (mucopolysaccharides) into simpler molecules. The accumulation of these large, undegraded mucopolysaccharides in the cells of the body causes a number of physical symptoms and abnormalities.
Hurler’s is MPS 1, the most severe form. Luckily for Kian’s family, he was diagnosed early. A Bone Marrow Transplant is not considered a “cure†for the disease but a treatment to slow down (or possibly stop) the disease’s progression.
Kian’s transplant was a great success. However, even with this success, they ended up staying in Durham at the Ronald McDonald House for almost a year. Even though Kian did not have any major problems, he had several “small†problems that called for delays in returning home.
I got very close to Kian and his mother while they were in Durham. I visited often, taking diapers, wipes and other necessities…along with developmental toys for Kian. It got to the point that Kian recognized me when I arrived and was sad to see me go!
During the time they were in Durham, Kian and his mom were housed in the Ronald McDonald House, relying on their shuttle for doctor and clinic visits. With no car, they also had to rely on others to pick up household items, groceries and other items. With the financial drains on their family from the loss of Aleeshia’s income and the lengthy stay so far from home, Kian’s dad and brother were unable to visit often. There were also issues with financial hardships at home….where two incomes made car payments, house payments and utilities “do-able,†the loss of one income and additional medical costs, etc created financial havoc! Me Fine stepped in as often as we could to help with these bills and others. We even made sure that their Christmas away from home was happy by having their family “adopted†by Me Fine supporters! Last Christmas, even though they were home, we still sent donated gift cards to help with Christmas. Kian’s immune system had not fully recovered and Aleeshia had not been able to go back to work. We know that treatment and hardships do not end when these families return home!
Even though Kian and his mom have returned to Connecticut, we still keep in touch via phone and email. When they come for their twice-yearly clinic and doctor visits, I am able to visit, as well. I have seen Kian’s progression from a one-year-old who could barely sit up by himself, to an active, “cruising†two-year-old who no longer is content to sit still in my lap!
