Thomas smith was born 17.09.94 following a normal pregnancy. When he was 6 months old and not reaching his milestones, after some investigating by doctors it was felt that Tom had severe cerebral palsy and would need lots of support. He received lots of therapy from Occupational therapists, physiotherapist and speech and language therapists, along with regular paediatric appointments. These appointments were sometimes quite hard because the professionals were looking to help him improve, so often highlighted the things he couldn’t do.
By the age of 3 he started at Fairfields special school in Northampton, and struggled with separation anxiety, so the music therapist, Jan Hall, thought that music therapy may help him. It did, and he and Jan built up a wonderful relationship.
Thomas’s brother Harry was born in 1998, and like Tom appeared to be ok following a normal pregnancy, however again by the age of 6 months we had concerns and the Drs agreed that something was wrong and we were referred to Great Ormond St Hospital, where they performed a battery of tests. Eventually they decided that both boys were suffering with a disease of unknown origin; however it was felt to be a genetic disease, which was degenerative. They didn’t expect the boys to reach adulthood. This was proven correct because sadly Tom died aged 10 on Dec 13th and Harry passed away aged 12 on Dec 17th 2010.
During both the boy’s lives they had prolonged periods away from school, which meant they missed out on their music therapy ( Harry started Fairfields aged 3 too and received music therapy too).
Tom and Harry were profoundly disabled both unable to sit unaided, walk, talk and relied heavily on adults to support all the basic needs. They both had significant health problems too, Harry in particular had debilitating pain, where he relied on some very strong drugs. Harry's health in his last year meant that he was unable to attend school so was lucky to have a music therapist from Thomas’s Fund visit him on a long term basis. For us as a family this was really good because he wasn’t always well enough to leave the house, so to not have the hassle of attending a centre for music therapy was very useful. The relationship with the therapist is really special as they are seeing the children at their best, and sometimes worst.
A couple of years following Tom's death, Jan Hall approached my husband and myself to see if we would agree to her setting up a charity to help children like Tom and Harry, and to call it Thomas’s Fund. We were delighted that our children had inspired her, and got involved with helping to set up the charity. A small group of professionals in special education, teachers, parents of special needs children and other people just wanting to help, got together to become trustees and committee members and volunteers. We are very lucky to count Earl Spencer and Andrew Collins as our patrons, along with 3 young ambassadors; Thomas and Matthew Redmond, and Sophie Baylis, three musical patrons, opera stars Jonathon Gunthorpe and Damian Thantry, and John Bowman. Andy Dickson is an ambassador, donating his fees from talks to local organisations.
The fund is run on a voluntary basis by these members; none take any payment, the donations we receive, pays for the music therapists, their travel expenses and some admin costs.
We see children from ages 0-19 in their home settings mostly, but do visit the three children’s wards in Northampton general hospital and are commencing the same in Kettering hospital too very soon. We also provide some bereavement music therapy for families/siblings of the children who have passed away. The charity sees children who are not expected to reach adulthood, this can mean that they are physically disabled or suffering with cancer, but they all have lost control of their own lives. We aim to give them some control again, and often families find our service extremely positive. We also help to create memories for these families when their child has passed away, we have found that invaluable when faced with the loss of the boys.
The therapists visit the child with lots and lots of instruments and always start with a hello song! The child then is given a choice of instrument where possible either verbally or by nonverbal communication. The therapist will accompany them with song, instrument or both (usually unless they play a wind instrument). They always finish with a goodbye song.
There are currently 4 therapists who cover 4 days a week, although that changes dependant on our funds and the waiting list. We can see a child in the final stages of life very quickly if referred to us. Referrals come from either the parents, children themselves or professionals such as Paediatricians, Speech and language therapists, Occupational therapists, children’s community nurses, schools and key workers among others too.
Each session costs the charity approximately £45 which includes the travelling costs. We offer 4 assessment sessions first, and if it seems to help (always has so far!) we then offer another 10 sessions, usually weekly. Occasionally some children are unable to attend school /nursery so we will support the child over a longer term. Currently we require approx. £60,000 per annum to run.
We are a very small charity so we rely greatly on individuals and organisations to raise funds for us along with grant applications and are very grateful for any support. We have a number of organisations who support the charity on a long term basis, and are one year into a three year grant from BBC Children in Need to total of £74,000, they fund two therapists for one day a week each.
The BBC have filmed one of the families which will be shown on the main Children in Need appeal night show on 13th November. We are very excited about this!