A slightly different blog post today from me however this story has touched me deeply therefore I felt I should share it with you all. Mila is my friends baby and was born in September 2013. In March 2014 Mila was diagnosed with TSC. TSC stands for Tuberous Sclerosis Complex which causes tumours to form on vital organs such as the brain, heart, lungs and eyes. There is no cure for TSC however research is helping to find new treatments to help people like Mila. Kathy, Mila’s mum has spoken about Mila’s plight and has set up a facebook page to raise awareness for Mila and TSC. Kathy tells how 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. She is still at threat of serious lung problems, eye problems and skin problems in the future.
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 up to £35,000 per annum for life 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), anything would be a help.
It means the world to us to make sure we do and fight for the best for our baby girl.’
Mila is such a special and beautiful girl, hence the reason I am writing this post today. I want to help raise awareness for Mila and TSC and help Mila in getting the treatment she needs. I’ve donated using the Just Giving page and any donation, no matter how large or small will help in reaching the target to assist in getting the help she needs. If you would like to donate, you can find Mila’s Just Giving Page here. Keep up to date with Mila’s story on Facebook too.
I want to thank you all in advance for any donations xxx
Click on the following link to read more information about Milas condition.