By SHAUNA ANDERSON
Ryven Harris was born with a very rare condition.
A one in a million disease that they were told was a death sentence.
His only cure – a bone marrow transplant. At only 12 weeks old Ryven was diagnosed with Wiskott-Aldrich Syndrome (WAS).
WAS is a rare recessive disease which led to him needing constant blood transfusions to save his life.
The disease only affects boys – and the average life expectancy of a male with WAS is 15 to 20 years.
The little blonde boy now aged 22 months lives in virtual isolation from other children even the slightest bump can cause serious bruising and hematomas for the energetic toddler and due to his low platelet count Ryven is at risk of excessive bleeding or haemorrhaging.
His mum wrote on her blog that she hopes one day he can mix with other children and live life like other little boys.
“Our goal is for Ryven is attend school one day and provide him the opportunity to live a reasonably normal life”
But so far life has been anything but normal for this Gold Coast family.
His first hurdle came when the Australian Red Cross Blood Bank came close to running out of his specific blood type which is O-negative CMV-negative. Ryven’s Mum and Dad, Robert and Cindy contacted the Today Show and live on air made a call for blood donors to help save their son’s life.
The response was amazing – the Australian Red Cross Blood Bank received 5,000 calls and 2,000 online bookings in 2 days – one of their biggest donation days ever.
But the hurdles continue because to live Ryven needs a bone marrow transplant – and his chance of finding a donor who matches his rare blood type have been virtually impossible despite him being on a registry of 15 million people across the world.
15 million people and no one to help – except perhaps his very own brother or sister.
Robert and Cindy’s only option was to make a donor. A new life to save an existing one.
The family began the process last year. Cindy wrote on her blog how risky – and potentially heartbreaking IVF would be.
“The IVF process gives no guarantees and after all of this, we still may be left without a match for our darling boy.”
“It is a gamble, but one we are willing to take” his Mum told Lisa Wilkinson.
After four agonizing rounds of IVF – at over $17,000 each – the family finally made an announcement on their Facebook page.
“WE FOUND AN EMBRYO MATCH after the past 4 IVF pre genetic diagnosis rounds spanning 16 months. This is gigantic news for us and everyone involved with our case. We don’t know where we would be without this space age scientific technology and the help of our family and friends. Thank you
And……..even bigger news is my super human wife fell pregnant with this beautiful precious baby boy that will offer an opportunity to save his big brothers life through a bone marrow match. “
Cindy’s baby – due in March is a one of those amazing medical success stories. The embryo needed to have an identical tissue match to Ryven in order to save his life.
“The scientists are amazing because the gene that I carry is not going to be passed onto the new baby,” Cindy told The Today Show.
“He’s going to be a healthy boy with, touchwood, no complications.”
When the new baby is born his cord blood will be saved for Ryven. The match is a 12 out of 12.
The family wrote on Facebook “We feel like we have won tatts lotto with the odds stacked against us and we so excited to be a family four in 2015. We can’t wait to meet our precious baby. He will be a very very special boy.”
We will keep you updated on Cindy, Robert, Ryven and their new baby.
Ryven Foundation:
The Ryven Foundation was started by Cindy and Robert to support Wiskott-Aldrich Patients .
They raise awareness and funds, to educate people on the importance of donating blood,
“To donate blood marrow isn’t actually scary. It’s a couple of injections, a blood transfusion through a tube and that’s it,” Cindy said.
“If we can get the message out there that that’s what it is and that will save a life, I think a lot more people will get on the registry.”
To contact the foundation visit their page here.
Top Comments
I think many people commenting on this article are confusing the facts with a Jodi Picoult book. Do a bit of research (start by reading the article again). The Bone Marrow will be taken from blood in the umbilical cord post birth. There is no invasive procedure that needs to be performed on the baby. This new baby is not being harvested, or used for spare parts. They will be a much loved second child for the Harris family.
This disease has a multitude of possible complications for Ryven later in life, including a higher incidence of other autoimmune disease and lymphoma. A BMT eliminate those risks, and allow Ryven (and his parents) to live a normal life.
I have a 2 year old son with the same defect, although it has manifested in a less severe form. This condition has only now been correctly diagnosed if my extended family (since the birth of my second son) - we have lost 3 boys under the age of 5 in the past three generations to what we now know to be this disease. I thank my lucky stars that there is a treatment available for my son and niece, who can potentially pass this disease on to any children they may have.
The IVF treatment in this case also allows Ryven's family to ensure that any children they add to their family will be free from this defect - essentially stopping the inheritance of the gene in this generation. Personally, my Husband and I have always wanted a family of 5 or six. However, the realisation that I carry this defect and have a 50% chance of passing it onto my children (Boys will be affected, girls will be a carrier like me) has put that on hold for now until we decide what treatment (if any) my son will require.
Keep going strong Harris family!! I'll be watching your progress and cheering you on Ryven. Your doctors, nurses and support team are very lucky to have the privilege to help you through this journey.
In the jodi piccolt book the younger sister was only ment for cord blood too
Thank you for providing some facts, people's moral radars are going off without first checking the facts.
This new baby cannot legally consent to this procedure. Since his parents seem unwilling to act in the best interests of their new son, the courts need to urgently appoint him a legal guardian that will act in his interests.
are you joking? all babies have their cords clamped? its in their best interest medically? Im actually confused as to whether or not this is a joke?