Fab family goes the extra mile for Elyse
At the young age of 26, Elyse has recently been diagnosed with two very rare blood diseases, Myelodysplastic Syndrome and Paroxysmal Nocturnal Hemoglobinuria. This means her body is unable to produce enough healthy blood cells and platelets, leaving her feeling constantly exhausted. As a result of the blood conditions she also bruises very easily.
Elyse’s treatment so far has included transfusions of 5 units of platelets and 5 of red blood cells.
The permanent ‘fix’ for Elyse’s conditions is a stem cell transplant to replace her bone marrow. It could be life saving for her. Initial testing of the family showed her father, Paul, was a 50% match. Although this is usually the case, sometimes a patient is lucky and inherits the same or similar tissue types from both parents. The next step was a search of the worldwide bone marrow database to see if a close match could be found. Unfortunately the search of the 25 million-strong donor database brought up no matching results. This too, happens in up to half of the database searches.
As a 50% genetic match, the chances that Paul’s bone marrow donation to her will result in a successful stem cell transplant are lower than with a full match, but there is hope it will help Elyse. Paul isn’t the only one offering support, however.
Elyse’s husband Mike is rooting for his wife, who he describes as ‘a selfless, compassionate and driven woman, and an amazing mother’. She has shown ‘amazing fortitude’ since her diagnosis, Mike says. The couple from Palmerston North recently got married, when Elyse surprised Mike by telling him about the wedding just three hours before the ceremony!
For now, the family has temporarily moved to Wellington to be by Elyse’s side during her chemotherapy and stem cell transplant. With both Mike and Elyse off work, a friend has set up a fundraising page to give them a helping hand. Mike says he has been blown away by the support that family, friends, organisations and total strangers have shown them.
Elyse’s mum Delwyn is also supporting the family, staying at Ronald McDonald house with them. Delwyn is one of our very own NZBS nurses in Palmerston North, so stem cell harvesting and blood donations are something she already knows a lot about.
Another person championing Elyse is Lisa, Mike’s sister. Lisa is taking the drastic step of cutting off and donating her long hair to be made into wigs for people who have hair loss due to chemotherapy and other treatments. Her goal? To raise awareness and to encourage Kiwis to give blood or to join the bone marrow registry. In her own words, ‘You'll produce more of the good stuff! Just as my hair will grow back, it's a small sacrifice to make for our loved ones.’
To find out more about how to become a blood donor to help save the lives of people like Elyse, click here or call 0800 GIVE BLOOD.
The New Zealand Bone Marrow Donor Registry is looking for men with Pacific Island or any other NZ ethnic minority group ancestors. If this is you, please consider joining. Learn more about joining the bone marrow registry here.