Haven Hills suffers from a rare blood disorder called diamond-blackfan anaemia and as a result needs a blood transfusion every three or four weeks. Here she is receiving her 28th transfusion on Thursday, February 27.
Haven Hills suffers from a rare blood disorder called diamond-blackfan anaemia and as a result needs a blood transfusion every three or four weeks. Here she is receiving her 28th transfusion on Thursday, February 27.

How you can give a sick child a bright future

IF it wasn't for generous strangers who roll up their sleeves to donate blood, Haven Hills might not be here today.

Haven, who turned three on March 4, suffers from a rare blood disorder called diamond-blackfan anaemia, a crippling disease where her bone marrow doesn't make enough red blood cells to carry oxygen throughout her body.

As a result, Haven suffered a stroke shortly after her first birthday, causing serious brain damage.

She must now receive a lifesaving blood transfusion every month. Haven recently received her 28th blood transfusion at the end of February.

With no cure for the disease, Haven's family is hoping to travel to America in the near future to talk to a number of experts who will hopefully shed some light on what her future will look like.

Kimberley and Leon Hills with their three daughters. The family are hoping to visit America in a few years time so they can speak to experts about their daughter Haven's rare blood disorder.
Kimberley and Leon Hills with their three daughters. The family are hoping to visit America in a few years time so they can speak to experts about their daughter Haven's rare blood disorder.

Haven's mum Kimberley Hills said the family was hoping to attend a special camp for seriously ill children.

"They are held every two years for children with chronic illnesses, and it gives parents the opportunity to talk to these experts and help you make a plan for your child's life while the children do fun activities," she said.

"We are hoping to go and make a long-term plan with these experts so we can get as much out of this life for Haven as possible.

"We want a better future and better treatment for Haven so there aren't as harsh side affects in the future."

In a bid to help find a cure sooner, the Ipswich community is rallying behind Haven and her family by holding a fundraiser on Friday, March 13 at the Kruger Parade Baptist Church in Redbank.

The day will feature special appearances by Disney princesses, a sideshow alley, live entertainment, a silent auction with more than 60 prizes up for grabs and more.

"The church has been really fantastic in organising this for us," Mrs Hills said.

"They kept coming to us and asking how they could help us with expenses like medical appointments and hospital parking.

"We will also be raising funds for a not-for-profit organisation called Captain Courageous, a foundation that explores cures for rare blood diseases."

 

Haven Hills requires blood transfusions every three to four weeks. She is pictured here with her family at the Red Cross donation centre in Ipswich.
Haven Hills requires blood transfusions every three to four weeks. She is pictured here with her family at the Red Cross donation centre in Ipswich.

 

Mrs Hill, who is expecting another baby daughter in a matter of weeks, is also hoping this child could be a blood match for Haven should she need a transplant when she's older.

"We are hoping this little bub will be a transplant match with Haven in the future," she said. "When she is born, the doctors will take blood from her cord and freeze it, so if Haven does have complications in the future, this will hopefully help."

Head down to Kruger Parade Baptist Church on Friday, March 13 from 6-8.30pm to take part in the fun. Entry is a gold coin donation. Find them on the corner of Kruger Pde and Henderson St, Redbank.