In 2015 my Life turned upside down when I discovered my daughter Teri-Leigh had a rare brain tumour known as a Hypothalamic Hamartoma. Not knowing what this meant for Teri-Leigh's future I searched the internet high and low to find information about this condition and hoped to find support and answers. I thankfully found a newly established charity called Hope for Hypothalamic Hamartomas UK. As the condition is very rare (only effected 1 in every 200000) it was hard to get accurate information even with specialists. However this charity was able to explain the symptoms which were associated with the condition. I felt the support they gave us as a family was not only reassuring and that I was not alone but I felt confident I could get through a difficult journey because I had them to turn too. Since contacting them I was desperate to help in anyway possible. I became a trustee recently and have built a very close relationship with other members of the charity.
Teri-Leigh and her little sister Georgia have also wanted to thank the charity for the help they have given. Although we have been reassured it is not necessary I know it’s something they are desperate to do. They asked if they could cut their beautiful long hair off not only to help Hope for Hypothalamic Hamartomas UK but also a second charity “The Little Princess Trust” will also benefit too.
Although at the beginning of the year the diagnosis was devastating it has also brought so many positives into our lives. I am so thankful to have found Hope for Hypothalamic Hamartomas UK and also so proud that this experience has shown such a caring side in my girls and bought them closer together.
For more information please visit www.hopeforhh.org.