Run for Phoenix - Phoenix Rises Stem Cell Treatment Fund
Phoenix has severe spastic quadriplegic cerebral palsy. His family are determined to build a brighter future for their wee superhero.
Auckland
Phoenix suffered from a lack of oxygen in the womb at some point and sustained severe wide spread damage to his brain. His parents were told he would never walk or talk. His committed family are fighting to help Phoenix, to give him a brighter future. But we need your help!
Until recently, he had little to no purposeful use of his arms or legs, poor trunk control, limited head movement and was fed by a mic-key button directly into his stomach as his swallow was not up to a safe standard. He suffered from epilepsy as a result of his brain injury, which currently is under control with the help of medication. He did not speak and made limited sounds. When looking at all of that, his future seemed pretty bleak.
In 2013, Phoenix was taken by his family to the Duke University to have his own cord blood re-infused by one of the pioneers in this field, Dr Kurtzberg. Small, but exciting changes occurred after Phoenix's treatment, so his family looked at other stem cell treatment options (as Phoenix's cord blood supply was limited).
In late 2015, Phoenix had a further 25 days of treatment which included not only the umbilical cord blood stem cell (UCBSC) injections, but also a comprehensive rehabilitation program.
Phoenix's treatments have had an immense impact on his development. He is laughing, smiling and vocalising more. He is LIVING.
Phoenix's family is planning a further round of treatments in late 2016. Treatment will be expensive, and is likely to cost in the region of $40,000. The treatment will involve the 8 umbilical cord blood stem cell (UCBSC) injections, and further comprehensive rehabilitation program, including physical and occupational rehabilitation, aqua-therapy, acupuncture, massage, hyperbaric oxygen therapy and transcranial magnetic stimulation.
The aim of this page is to help raise funds for Phoenix's proposed treatment later this year. Every single dollar counts. Can you help?
His family would love your support for their little boy. His name is Phoenix, and he will rise with your help!
Follow his story at:
Lynne Van's involvement (page creator)
Most years I run for Starship in the Auckland marathon. This year, I decided I would run the Gold Coast half marathon (with the aim of doing my first full in Taupo/Auckland or Queenstown) to help fundraise and make a tangible difference for one child and his family. I have watched several families fight cerebral palsy for their children. It is a hard battle which requires commitment, love and the support of friends and family. It is my hope that one day, stem cell treatment will be a little more obtainable and affordable for all families, but until then, wee battlers like Phoenix need our help!
Follow the training up to the lead up to the runs on instagram (lynnevan00).
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Lucinda, thank you so much to you and Jamberry for such a fantastic and fun fundraising event! Love your work, babe!
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