Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement.
This is Will’s Story
Will was born with an X-linked recessive disorder called Wiskott-Aldrich Syndrome (WAS). It’s very rare, only 1 to 10 males per million have this condition. He struggled with low platelets (cells which clot blood) and eczema throughout his infant years. At age 2, Will was able to join a drug trial for Promacta (Electrombopag) which raises platelets at Cornell University. Eventually, the medication was FDA approved for people like Will and he is still able to take it daily. It raises his platelets from 10k to close to 100k. Most people have 150-400k platelets. Everyday activities like riding in a car, playing outside or riding a bike are major complications for people with low platelets.
Will has always been more susceptible to infectious diseases. He and people like him are why we use vaccines to protect the general public. One of the terrible consequences of WAS is that patients succumb to infections or malignancies. Patients with WAS have an increased risk of cancer compared to normal individuals. Overall, it has been estimated that 15-20% of patients eventually develop malignancies. Lymphomas or leukemias that arise from B-lymphocytes are the most common with Non-Hodgkins lymphoma making up the majority of cases.
Will isn’t the only person in our family with WAS. Emily’s brother, Daniel was also affected. You can learn more about Daniel, his wife Sara, and kids: Henry, Liam and Cecilia at his CaringBridge site: Daniel | CaringBridge (https://www.caringbridge.org/visit/danielkinsell
Eventually Will’s symptoms associated with WAS worsened to the point we began researching curative treatments and chose stem cell transplantation.
A stem cell transplant begins with finding an HLA match, undergoing “conditioning” chemotherapy, receiving the donor’s cells, transplant, and recovery. If you are interested in joining the bone marrow registry to help people like Will, here is a direct link: https://join.bethematch.org/s/landing?language=en_US
It is a long road.
Will is ready.
The premier providers at the National Institute of Health are capable of saving him.
We (Emily, Jamie, Steve, Karyl, Leslie, Sara, Henry, Liam, and Cecilia) are here to love and care for him.
Thank you for being here too.
Peace and love,
Emily and Jamie
If you would like to donate to Will’s GoFundMe Campaign, please visit: https://gf.me/u/yzxg6u
Funds will be used for medical costs, travel costs, hotel stays, Uber rides, food, and other necessities as we help him prepare for a transplant.