In December 2017, Henry was diagnosed with Hurler Syndrome, Mucopolysaccharidosis Type 1 (MPS1). There is no cure. Life expectancy is early childhood. Hurler Syndrome is a rare genetic metabolic disorder where the body cannot make an important enzyme called alpha-L iduronidase, which is needed to break down sugars. These sugars build up in cells and cause damage throughout tissues and organs in the body. People who have this disease can have problems with how their bodies grow and work, as well as trouble with thinking and learning. Multiple body systems are affected.
So far in this journey, Henry has lived with Kate at Cincinnati Children’s Hospital for almost 3 months. During this time, Henry has undergone chemotherapy and a bone marrow transplant to maintain and preserve his mental and physical functions. They expect to live there for a minimum of two more months. During this time, Corey and Jack have stayed in Brownsburg and traveled to Cincinnati as they are able to visit Kate and Henry.
Kate and Corey are striving to continue to give Jack and Henry the best care and the best possible outcome with this new diagnosis, but it comes with astronomical medical expenses from bone marrow transplant, co-pays, ERT, travel expenses, therapies, etc. that will be ongoing throughout his life.
Two of their big needs as a family are carpeting in the main living area and an updated kitchen. Due to his diagnosis, Henry is a fall risk and the family must install carpeting throughout the main areas to protect from a hard fall. From what we can tell, the family’s kitchen is original to the house built in 1960. Before Henry’s diagnosis, Corey and Kate were making plans and beginning the process of renovations, but the diagnosis halted the progress. A contractor was brought in which resulted in them learning that the subfloor is severely damaged and without repairing, renovations could not move forward. With the hardships this family is facing, we would like to help with the needs listed above and give Corey and Kate an updated and safe space to better care for their family.
Please join us by supporting this renovation so that Corey and Kate can focus on caring for their family during this time. Time is of the essence, Henry cannot be around any construction and this must be completed before Kate and Corey are discharged from the hospital in the next two months.
Fund Details (the who, what, and how):
I have known Kate and Corey for over 15 years and, along with my husband, we have moved from Missouri to Tennessee to Indiana with the Egglestons. We are like family :)
The funds will be withdrawn by me and paid directly to contractors for services and businesses for materials. Services and materials include: drywall install, subfloor repair, electrical and plumbing repair, carpet/vinyl tile and install, cabinets, appliances, countertops etc.
I am not doing this alone. :) Along with a volunteer project manager, a volunteer designer (Julie, another close friend of the Egglestons), and many other volunteers, we are putting together a safe, repaired, and updated home for their family. Thanks to everyone for helping the Egglestons. Can't wait til they are home together!
- Jeffrey Haight
- Bob & Jo King
- LB Johnson
- Mr. Fezziwig
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