We’ve had a request come through to help a 3yr old boy from Whitefield with complex Hunters Syndrome, also known as MPS11. This is a progressive disorder involving every cell in the body, it is also life limiting. Treatment for this condition is a weekly infusion intravenously of a special drug, which is a recombinant form of the missing enzyme.
Ronnie attends a special nursery a couple of days a week and has the use of their sensory room. He responds well to light and sound. His doctors feel having some sensory equipment at home would benefit him. His young parents are not in a position to be able to afford this so I’ve just placed an order for some sensory equipment to enable them to have a little sensory room at home for Ronnie.
This summer we have been asked to help many local families who are living in tough times with new school uniforms for their children. Having a new uniform not only gives the children more confidence going back to school but stops them being bullied.
That’s all the uniforms sorted – 15 families with 38 kids between them all got brand new uniforms from head to toe for when they start back at school in September
The Frost Foundation has been asked to help a little girl called Samera. Samera was born with significant health difficulties , she has chronic lung disease , scoliosis , prune belly syndrome ( which means she has no abdominal walls ) , she walks with assistance of a walking frame .
The therapist involved inform her scoliosis has worsened following her recent hip surgery – she has been in a plaster cast for 12 weeks ,
We are informed that horse riding will benefit and strengthen her core trunk – with a view to her walking independently . We have booked a course of 20 special riding lessons for Samera, hoping this will help with her rehab. Good luck Samera we will check your progress with much interest
That’s another donation from the Frost Foundation completed. Over £1000 worth of Sensory Equipment delivered to Tottington Primary School so the children with special needs can look forward to a brand new sensory room in the new term.
Earlier this month we had a request to help a little boy who has a diagnosis of Smith Magenis Syndrome which affects his learning with some associated health needs ie; unable to reproduce , reoccurring chest / coughs and colds , squint, sometime spending lots of time in hospital.
He doesnt communicate at all.
He has just started at nursery and with speech input , he has shown good skills using an ipad , and there are a number of apps the speech therapist has provided to help him.
We are delighted to have provided an ipad for him.
Had the most amazing news today. This is a very special piece of equipment that we have bought for Eden, the young girl who had a horrific accident earlier this year, resulting in her having a hypoxic brain injury. Eden is obviously a very strong girl as her progress is coming along so well that she was actually pedalling the bike on her own today. Her mum sent me the amazing news and asked me to thank everyone for their kind donations which helped buy this equipment. This is what we do, we try to help local children and their families have a better quality of life. Well done Eden we are so proud of you .
Thank you to all the ladies who attended the Ascot Ladies Day at Mere Court , you all looked fabulous. I mentioned at the beginning of the day we are looking to get a special piece of equipment for a 2 yr old little girl who has Spina Bifida and thanks to the generosity of the ladies today we will be ordering that equipment tomorrow. So thank you ladies. And for those asking yes we will be holding the event again next year but at a different venue.
Our biggest event of the year was held at the Midland Hotel on Saturday 14th May – with the theme being Titanic. It was a wonderful evening, fantastic food served to 230 people, amazing entertainment from Dominic Halpin and the Honey B’s, a mesmerising floor show from some of the young dancers from Freak Dance and dancing till late with the top DJ Keith Fane.
Through the generosity of the guests on the evening £20,000 was raised.
Congratulations to Jillian Burrows on winning the April Bonus Ball with number 31
A great day was had by all at this special event. The fundraising committee pulled out all the stops by serving up a delicious afternoon tea and dressed the venue with flags of St George. We were all entertained by a fabulous singer, finishing the day with a rousing sing a long. Thank you to Marsha, Emma, Justine, Helen & Maureen for all your hard work. Mum would have loved this.