Jake is a 12 year old boy from Perth, Western Australia. Jake is like many 12 year old boys - loves to play computer games, sports and complaining about cleaning his room! Jake also has a rare form of blood cancer called "Chronic Myeloid Leukaemia" or CML. He was diagnosed in July 2013 and the disease accounts for only 0.03% of all cancers diagnosed. It's even more rare to occur in children aged 0-14 years with around 4 cases diagnosed per year in Australia and 126 children worldwide. Jake's only chance for a cure is through a stem cell/bone marrow transplant however he has not been able to find a stem cell match due to his mixed caucasian and Samoan heritage. Renee, Jake's mother is pleading with the Samoan community to join the bone marrow registry to save her little boys life.
Quest for a cure
Jake's mother, Renee has taken the search into her own hands and created the Jake's quest for a cure Facebook page. Jake has been unable to find a match worldwide. He has a Samoan heritage and unfortunately there are not enough people from the Samoan community on the bone marrow registries which is why he is finding it difficult to find a match. A patient is more likely to find their match with someone who shares a similar ethnic background to them. Renee along with the help of the community, has organised bone marrow donor drives to encourage people to come along and join the bone marrow registry by getting a small blood sample taken. The standard process to join is by calling the Red Cross on 13 14 95 (if aged between 18 - 45) to book an appointment and getting the blood sample taken at a Red Cross centre. However Renee wanted to do more to encourage people to join. Renee states, "What lengths would you go to in the quest to save your child's life?"
42 blood samples were collected at one donor drive. Another donor drive saw 2 sessions held during one day for people to join the registry. They organised jumping castles, face painting, roaming circus performers, door prizes and raffles. They even had "Team Jake" t-shirts made up! People said that, "...it was so easy and a pleasure to do..." and "...hope you got lots of people, even having just one more person join the registry means more chance of finding a match for Jake and others!"
These were great days that prove many people in the community are keen to help out, there just needs to be more awareness and education about the bone marrow registry! Unfortunately these donor drives are usually organised by a patient's family as a desperate attempt to find a match. They are very reactive and Ur the Cure is setting out to take a more proactive approach to educate the public in advance.
The current treatment for CML is an oral chemotherapy drug that is taken every day for the rest of a patient's life. The idea of this type of chemotherapy is to target the cancer cells and keep them under control so it does not advance to the "accelerated" or "blasting" phase (where the blood counts become very abnormal and more symptoms develop). This drug is not always well tolerated and unfortunately in Jake's case he has not responded well to it, so he is currently on a trial drug. At this stage he has not been able to reach remission and he is now searching for a match to have a stem cell/bone marrow transplant as a chance for a cure.
Renee and her family and friends will continue to educate their networks about the bone marrow registry. Ur the Cure will also share the story through our network as we attempt to collaborate with some of the overseas bone marrow registries located in countries which have large Samoan populations. It would be Jake's dream to have the Samoan Rugby team and the actor Dwayne Johnson, otherwise known as "The Rock", on board to help promote Jake's cause to encourage more people to join. "The Rock" comes from a similar ethnic heritage as Jake and we hope that we can make this happen. A very mature Jake is also aware and is keen to help others in his community, knowing that more people joining the bone marrow registry can also result in matches for others who are waiting.
Australia is a multicultural country and as more couples from different ethnic backgrounds have children of a mixed ethnicity, the more likely we are going to need lots of people from a variety of different and mixed ethnic backgrounds to join the bone marrow registry. If the children of today and the future become sick and are in need of a stem cell match, they will find it very difficult to find one.
Renee's fighting spirit is inspirational, and of course so is Jake and his family and friends. Renee is a superb mother who is trying to find the balance of protecting her son from the emotional stress that can come from a public plea and also doing all that she can to campaign for her son. Together we will keep fighting for this important cause!