Dylan is a beautiful, happy, smiley baby. His mum Carrie is a friend of mine, and a past pupil of the Girls’ Model. In January he was diagnosed with a very rare genetic disorder called Tay - Sachs disease (TSD). The disease is so rare, that in the UK there have only been 6 cases reported in the past 20 years.
TSD causes gradual destruction of nerve cells in the brain and spinal cord and most children die between 3 and 5 years old. At present in this country there is no cure or treatment for the disease, however, active research is being done in the U.S. and around the world.
Dylan’s mum and dad are trying to raise funds to take him to other countries for research treatment. This may slow the development of symptoms and hopefully prolong his life.
There are many fundraising events planned for the months ahead. All events can be seen on Dylan’s BEBO. Many girls have left messages of good luck on BEBO which is more than appreciated by the family.
Before Half-term, pupils and staff raised £341. £295 of this was raised from collections and £46 from the valentine ballot (organised and collected by Miss Cameron). I presented a cheque and card to the family last week and they were delighted.
If you want to donate its not too late. There is a collection box in the Kerr staffroom in which you can place your pennies. There may also be wrist bands for sale – more information to follow.
Many thanks,
Miss Strand
