Support Alistair's Bone Marrow Transplant Journey

Hi! We are Angela & Rob Massar, and Ryan Pauling, the parents of Alistair, a remarkable teen who is undergoing Bone Marrow Transplant in the summer of 2024, right around his 17th birthday.

Alistair was diagnosed with Chronic Granulomatous Disease (CGD) when he was 6 months old, and has spent the last 16 years managing the life-threatening immunodeficiency with medications, procedures, and many lifestyle restrictions and modifications. CGC is a genetic disorder that occurs when a type of white blood cell, called a phagocyte (neutrophils, macrophages, monocytes), doesn't work properly. Phagocytes help your body fight infections. When they don't work as they should, phagocytes can't protect your body from bacterial and fungal infections leaving you at risk for serious and sometimes life-threatening infections in the lungs, skin, lymph nodes, liver, stomach and intestines, or other areas. Serious gut disease, called CGD colitis, can also accompany CGD.

Alistair had many serious infections during his first 6 years of life, and then, with treatment, medication, and much caution was able to avoid serious illness for almost 7 years. The past 2 years have been increasingly difficult, and Alistair's health has suffered. A Bone Marrow Transplant will cure his CGD, treat his severe gut disease, and allow him to live a life free from CGD and it's hardships and restrictions.

Over the next couple months Alistair will be undergoing a lot of pre-admission testing and labs, as well as treatment for the gut inflammation and a lung infection he is currently fighting. Once his health is stabilized, and we have a donor secured he will be admitted to the Wilmot Cancer Institute at Strong Memorial Hospital. He will undergo fully ablative chemotherapy which takes about 2 weeks to wipe out his bone marrow (and his immune system). He will then receive the transplant, along with a lot of meds to prevent infection and help engraftment. For the next 3 weeks or so the donor cells will grow (aka engraftment) and he will be cured of CGD. After engraftment we will return home, and then have clinic visits 3 days a week at Strong for the next 3-4 months. Hopefully by February he will be able to return to Brighton High School to finish his Senior Year in person!

There are a lot of risks and unknows, but we all want a healthy and happy future for our courageous, bold, talented, and tender kid. Knowing that Alistair sees a future without the restrictions inherent in CGD, and without increasingly bad gut disease and physical discomfort gives us all a lot of hope and excitement. He deserves a future free from CGD.

While insurance covers most of the transplant and hospital bills, there are a lot of uncovered costs and financial burdens including lost wages for both parent households, food/meals for family during hospitalization and post transplant, gas, parking, enrichment and entertainment and lost experiences for Ali, nutritional supplements, extra tutoring, heavy duty air purifiers for both homes, durable medical goods--and that is all assuming the best possible outcome for transplant. We also need to plan for Ali needing extra support as he recovers from years of illness that disrupted his education and experiences, and for the reality of slow recovery from transplant. The potential for complications also requires planning and preparation. Removing some of the stress of the financial burdens will help us provide the best care for this kid as he receives treatment, heals, and recovers.

Your donation will help Alistair and our family as we undertake this life-changing, and monumental medical journey. We are grateful for your presence in our lives, your encouragement and prayers and energy and love, your messages, and for your financial support. Sharing our fundraiser far and wide will also help us gather support and resources.

Stay tuned for updates, photos, and loads and loads of good news!

With love and gratitude,

Angela, Rob, Ryan, and of course Alistair