Phoenix has severe spastic quadriplegic cerebral palsy and we are determined to find a brighter future for our little superhero.
Auckland
Phoenix suffered from a lack of oxygen in the womb at some point and sustained severe wide spread damage to his brain. We were told he will never walk or talk.
He has little to no purposeful use of his arms or legs, has poor trunk control, limited head movement and is fed by a mic-key button directly into his stomach as his swallow is not up to a safe standard. He suffers from epilepsy as a result of his brain injury and we currently (touch wood!) have this under control with the help of medication. He does not speak and makes limited sounds. When looking at all of that, his future seems pretty grim!
But he is ALIVE. His bright eyes and his beautiful smile tell us he is awake and stuck in this little body that doesn't work for him. We are committed to try everything under the sun that may work for him and stem cell therapy is one of those things. We do the conventional therapies, we do home therapy and after hearing first hand how stem cell therapy is helping other children, we feel we MUST try this as well.
In 2013 we took Phoenix to the Duke University to have his own cord blood reinfused by one of the pioneers in this field, Dr Kurtzberg. We saw some small but exciting changes in a short space of time after the infusion so we are excited to give this another go. As there is a finite amount of his own cord blood, we have looked into other treatment centres offering other types of stem cells.
Phoenix has been approved for a 25 day treatment in September which will include not only the umbilical cord blood stem cell (UCBSC) injections, but a comprehensive rehabilitation program that may include physical and occupational rehabilitation, aqua-therapy, acupuncture, massage, hyperbaric oxygen therapy and transcranial magnetic stimulation.
Once we return home, we will continue with our own home therapy programme helping to get those new cells up to speed with how his body SHOULD be working.
This entire trip will cost $50,000. It's a lot to raise in a short amount of time but we are determined to do it.
We thank you for your love and support of our little boy. His name is Phoenix, and he WILL rise. xx
"The love of a parent for their child is undeniably the strongest emotion in the human soul."
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