This year, all of the money raised through the Old Town Tug O War will be helping 7 year old Willow and her family. Willow was born with a rare illness called Lissencephaly.

Willow’s birth was straight forward and she appeared to be well and healthy. As she grew, her parents spotted some worrying things such as Willow choking in her sleep and falling behind with development milestones. Despite raising their concerns to their local GP, Willow’s parents were told that there were being paranoid parents. When she was 8 months old, Willow was at an unrelated hospital appointment where the doctor confirmed that milestones were being missed. Willow and family then went through 53 hospital appointments before finally receiving the diagnosis of Lissencephaly.

During pregnancy, a baby’s brain should develop many folds and wrinkles as it develops which allows the brain to function normally. In rare cases, such as Willow’’s, this doesn’t happen. There is no cure for Lissencephaly. Although the prognosis for children with Lissencephaly depends on the degree of brain malfunction, some children may never be able to sit, stand, walk or roll over and many will die before the age of 10. Some of the symptoms can include difficulty swallowing, failure to thrive, muscle spasms and seizures.

Despite the prognosis, Willow is now 7 years old and is currently making the most of life. She has learned to walk, learned to communicate using makaton signing and she goes to the most incredible school where she has the best friends and support network. Although her parents continue to keep a watchful eye as things can change dramatically very quickly, as long as Willow reamins in good health and her seizures stay under control, she is expected to continue as she is and keep enjoying life.

We need your help to raise as much money as we can for Willow and her wonderful family. One of the things that would really benefit Willow is to have a sensory room built for her and this is what we would like to help with. So please, dig deep, ask your friends and family, reach out to anyone you know and let’s raise as much as we can to help this incredible family!