Kathy Clark
Making Miracles For Mila
Fundraising for Tree of Hope
Story
Hi everybody! Mila was diagnosed with Tuberous Sclerosis Complex (TSC ) in March 2014 and she faces many challenges ahead. Here is her story...
No one can prepare you for the amazing experience of becoming a parent, those overwhelming feelings of love, joy, happiness, protection. The day we found out our baby has a life changing illness, it hit us like a steam train. Mila has a huge fight on her hands.
TSC (Tuberous Sclerosis Complex) causes tumors to form on vital organs like the brain, kidneys, heart, lungs, eyes and skin. There is no cure but research is helping find new and better treatments. The specialists have confirmed Mila has numerous tubers that sit on top of her brain like scars. These inoperable tubers block message pathways on the brain and cause her problems. Mila also has a SEGA (Subependymal giant cell astrocytoma) inside her brain which affects only 20% of patients with TSC. This can be life threatening if it grows, moves or blocks the important canals where it sits. Milas low heart rate is the result of a tumour blockage on one of her hearts valves. Mila is still at threat of serious tumours growing on her lungs, kidneys and eyes.
She is currently on medication to prevent seizures and this seems to be working at the moment however we have to change her medication soon as the side effects can be quite serious.
We are fighting for an important drug called Everolimus which is widely available internationally, however deemed too expensive for the NHS. An adult using this drug can cost approx £35,000 per annum for life (less than half for a baby) but the benefits have been proven to be completely life changing. Recent trials have proved the drug shrinks 95% of brain tumours in children and also can prevent tumours developing on the kidneys, lungs and skin. New research has also shown that it has a beneficial effect by reversing potential learning/behavioural difficulties and preventing seizures. World top specialists in TSC based in Cincinnati, U.S.A have offered to see and treat Mila, however we would need to raise for the funds for this.
We face many uncertainties ahead as Mila copes with TSC. If there is any way you can show your support for us and help raise funds that we can use for Mila's treatment (Everolimus drug).
It means the world to us to make sure we do and fight for the best for our baby girl.
Thanks from Mila's Mummy and Daddy.