The Jennifer Trust for SMA have received the following request for help from an Occupational Therapist looking after two children with SMA in New Zealand. If any member can help, please use the e-mail address link to send an email directly.
Greetings.
I am an occupational therapist working with children in Auckland, New Zealand, and have an unusual request for you.
At present, I am working with two brothers with SMA aged 13 and 15. The boys are intelligent and interested in astronomy, so in April this year, I sent a letter to Professor Stephen Hawking at Cambridge University to see if he would meet with the boys if I could get them to Britain. Professor Hawking replied and agreed to meet with the boys.
We have been very fortunate to date. I provided the family with a support letter, stating that I believe the whole family should go on such a trip (mum, older sister and three younger siblings, triplets aged 11). A few organisations will pay the family's air fares. So we are hoping to get them to Britain around August, 2005.
As you will be aware, the two boys will have high needs. They use electric wheelchairs for all mobility, and are fully dependent for all cares and transfers. Their mother turns them in bed 3x a night to prevent pressure areas developing.
To help make this dream-come-true opportunity real for the family, could your organisation either help, or direct us to suitable persons/organisations that could help with:
- Transport. That may be a suitable vehicle for the family, or even advise regarding suitable public transport.
- Accommodation. You will be aware they will need suitable high/low beds, pressure mattresses, wet area bathroom with shower trolley, and a hoist.
Thank you for considering this request. If you require further information from me, please contact me at this e-mail address, or my work address
Yours truly
Adrian McPherson
OCCUPATIONAL THERAPIST
