Piper's Journey with Diamond Blackfan Anaemia

Piper is a 10 year old girl who was diagnosed with Diamond Blackfan Anaemia when she was 4 years old. It is a very rare life-threating genetic blood disorder that affects the ability of the bone marrow to produce red blood cells, with just 5000 people worldwide diagnosed. Piper is finally scheduled to have her Bone marrow Transplant, graciously donated by her older sister Skyla. Piper and her mum Cody will have to stay in Sydney in isolation anywhere between 3-6 months after the transplant is complete. This has been an extremely emotional and costly process for the family. Any donation would mean the world to them and would help alleviate some stress which will allow Cody (pipers mum) to focus on Piper's recovery instead.

Piper's Story

Piper is a beautiful, sassy 10 year old who was diagnosed with Diamond Blackfan when she was 4 years old. This condition is extremely rare and very difficult to diagnose as there is very limited information and support surrounding the condition. Piper has never had the chance to go swimming, have a holiday too far away from any hospitals or have a normal childhood.

Since she was 4 years old Piper has had to attend weekly visits at the hospital, she has had 13 procedures, ranging from endoscopies, laparoscopies, multiple line insertions, multiple cannulations, and over 30 iron transfusions. Her DNA has been collected and sent off to 3 different genetic testing places. Piper was also the very first child to have an MRI scan at the Prince of Wales Hospital when she was only 8 years old.

Her condition requires her to carry a pump. This pump acts as her infuser and removes the excess iron from her body due to the transfusions he has to regularly receive. This has taken a toll on her both mentally and emotionally.

The ultimate goal has been for Piper to receive a bone marrow transplant in the hope of reducing the number of hospital visits and ongoing treatment required. Her gorgeous and generous older sister Skyla is a match for donation and has agreed to donate her bone marrow. This will mean that Skyla will also have to spend time in Sydney for recovery.

In preparation for the bone marrow transplant Piper will have to undergo Chemotherapy to kill her current bone marrow. She has had to freeze her eggs as there is the risk of becoming infertile after chemotherapy, which is just another procedure she has had to undergo. After the BMT she will need to remain in strict isolation in Sydney for up to 3 months. This means no physical contact with anyone but her Mum, Cody, as during this time she will be easily susceptible to infection with zero immunity. 6 weeks of this time is spent in the hospital with the remaining 6 weeks being in private accommodation that must be within 20 minutes of driving distance or 5 minute walking distance of Sydney Children’s Hospital, Randwick. Unfortunately any accommodation available is at their own private expense. They will need to report daily to the hospital, public transport is too high a risk with Pipers immunity level, so transport options are limited and costly as well.

Cody has had to give up working to support Piper through this scary process and will have to leave pipers two sisters at home in Bathurst, with Cody’s Mum and Dad. This will take a huge financial and emotional toll on the whole family. Cody is a single mum who has spent the last 10 years giving her all to her three girls. We have seen how much love and care she has for them all. Cody is an incredibly hard working person and a valued member of our work family. She is a very independent and strong women that has never asked for help which is why we have created this Go Fund Me with the family’s blessing.

Any donation would mean the world to them and would help alleviate some stress which will allow Cody to focus on Pipers recovery instead..