On January 13th, 2016, Jason's sister Dawn and her husband Robert welcomed their first baby daughter into this world. They named her, Quinn Marie Shirley. She has been in hospital in Victoria, BC (where they live) for the past 3 months. In February she was diagnosed with ADA (adenosine diminease) Severe Combined Immunodeficiency, commonly known as "bubble boy disease". Basically she was born with zero immunity and lacks certain cells to fight off infection. This is an extremely rare (1 in a million) disease. She has suffered from both lung and stomach infections that have had her fighting for her life and living in isolation.
Quinn's best chance for a cure is a treatment called, gene therapy. Basically this treatment will involve the repair of Quinn's own stem cells by adding the gene that is missing from them. This is an experimental treatment and will need to be performed at the University of California, Los Angeles. All 18 children who have had this treatment have survived and been cured. Quinn is tentatively on the waiting list for a trial of this treatment to be done in October. This is a very expensive treatment and high in demand. The family is hopeful that the government of British Columbia will cover the costs, however at this time this is yet to be confirmed. In the mean time, doctors are hopeful that she will get to come home within a couple of months as she awaits for her gene therapy treatment to be done. Of course the home will need to be completely sterile and prepared for her to be "bubble living". After the treatment has been done, Quinn will most likely need to stay at BC Children's Hospital while she recovers. This could take several months. Once Quinn has recovered she will get to come home, although her home will still need to be completely sterile as she adjusts to life outside of a hospital . Visitors will need to be limited and precautionary measures will be taken to make sure Quinn is protected. This could take an additional 1-2 years until she can completely begin normal living. Clearly this will be a long and difficult journey for this family.
The financial burden on them will be enormous (travel and living costs for the family in California as well as Vancouver if need be, bubble living at home, taking time off work, counselling, etc.) therefore this fundraising page has been created for them by their family. They will be trying to access resources such as Ronald McDonald House while in Vancouver, but these resources are limited and not long term. We are hoping to alleviate some of this financial strain on them as much as possible. A donation of any size is greatly appreciated. No parent should ever have to go through this heartache. Please keep Dawn, Rob and baby Quinn in your thoughts and prayers during this difficult time.
While a stem cell transplant was the original treatment plan for Quinn, gene therapy is now the absolute best option. However, we still want to urge those who are wishing to add their name to the stem cell registry to do so. If you would like to add your name, please visit www.blood.ca. This link will explain everything that you need to know to get you started in your application process. You will need to fill out a short questionnaire to determine if you are eligble. Once you have registered online, you will receive a testing kit in the mail within a couple of weeks. The instructions are very straight forward. You will be asked to send them back a buccal swab via mail. You will then be notified once you have been officially added to the stem cell donor list. Once added, if at anytime you become a match for someone awaiting a transplant, you will then be notified and asked to donate upon your will. It is completely your decision and you can decline at any point in time if you wish to do so. Please consider adding your name to the registry. In doing so you could save many lives, including other babies who are in need of a stem cell transplant.