Maia's story

Maia Friedlander suffered oxygen deprivation at birth. Last year she became just the 51st child worldwide to have a reinfusion of her umbilical cord blood, which revolutionised her family’s world. Karen Kotze reports.

At age five Maia Friedlander’s life is just beginning.

"She wasn’t even here before. Now she’s a real character," says her father Daniel.

To understand the joy it gives him to recount his interactions with Maia, her love of icecream, nuts and apples, and how she jumped for the first time just days before, it is necessary to go back 11 months.

Mr Friedlander lists every type of specialist and therapist he and wife Jillian hired to help their brain-injured daughter. From speech therapists and physiotherapists, to behavioural therapists.

Maia spent up to six hours a day in therapy, to no avail.

"She faced a lifetime of therapy with no promise of improvement," Daniel says.

The child didn’t fit into any box. With no diagnosis there were no care guidelines and an uncertain future.

"Maia was like our war. We’d talk about her sister Arielle like any other parent, but when it came to Maia we were constantly strategising, cross-questioning ourselves and everything anyone said, drawing up plans to manage every aspect of her life.

"Pretty much all she did for years was drool or scream."

Daniel says his wife poured herself into research, balancing Maia’s care with her twin’s needs.

"She pulled out all the stops to get Maia this treatment. She’d be on the phone and fax and email countless times, up at 4am making sure she caught the right people at the right time."

Last August Jillian took Maia to the United States for a procedure pioneered by Joanna Kurtzberg, a leading paediatric oncologist at Duke University in North Carolina.

Maia’s parents had stored her stem cells with CordBank and these were dripped back into her blood stream.

New Zealand company CordBank specialises in storing umbilical cord blood.

During fertility assistance the Friedlanders’ doctor had suggested they store the twins’ umbilical cord blood "just in case".

Two days after the procedure, Maia’s balance improved. Her eyes became more focused and alert, she ran and started talking for the first time.

When she arrived home seven days after the treatment her dad says it was like seeing who Maia is for the first time.

Her progress in the past 11 months is mapped in a myriad ways – her whole face has changed because being able to chew is developing her jaw, and feedback from her kindergarten shows that she has gone from merely being in the class to "an important part of it".

"Maia is not yet a typical five-year-old. She is also one, two, three, and four-year old because she’s making up all the developmental time. So while she understands more than she can say, she’s discovering her abilities to interact, express herself and even say no," Mr Friedlander says.

"We are fortunate we could afford to send Maia to the US. Access to this treatment for children in New Zealand would be life-altering."

Win a $1000 voucher

Since 2005, umbilical cord blood has increasingly been used in regenerative medicine, in which the body’s stem cells are used to cure failing, impaired or injured tissue.

Stem cells are the "master" cells that form the basis of all tissues, organs, and systems.

Cord blood can be used to treat a number of illnesses such as leukaemia and cerebral palsy. Because the cells are the patient’s own they are a perfect match.

An increasing number of grandparents are paying to bank their grandchildren’s cord blood as a gift.

CordBank is licensed by Medsafe, the regulatory arm of the Health Ministry.

Cord blood is stored at CordBank’s state-of-the-art facility and treatment is done in New Zealand or around the world depending on the type and where it is available.

CordBank is offering one East & Bays Courier reader the chance to win a gift voucher worth $1000 towards cord blood banking and storage for themselves, a friend or family member.

Write your name, address and daytime phone number on the back of an envelope and post to: CordBank compeititon, East & Bays Courier, Private Bag 92815, Penrose before July 21.

For details about Cordbank go to www.cordbank.co.nz.

- © Fairfax NZ News