Mila's Story.

Mila who is turning three in April, was diagnosed with Tuberose Sclerosis Type 2 in the womb, after benign tubors were found in her heart and brain.

She has been under a consultant at Addenbrooke’s Hospital and Great Ormond Street Hospital since birth. Mila also developed epilepsy at 4 months old, which is very common in TS sufferers. She currently has benign tubors in her brain and behind her eyes causing daily fits and prolonged seizures. Each prolonged seizure would result in her being put into an induced coma. In 2018 alone Mila suffered five prolonged seizures each resulting in her being admitted to hospital.

Mila was a very active, playful, funny & happy little girl who enjoyed being outside as much as she could regardless of her TS. She also loved to read books and watch Ben & Holly while snacking on her favourite food. Mila had started at the local village preschool in September 2019 & was doing amazingly well, considering her daily challenges.

Unfortunately, after a year of not having any prolonged seizures and her daily fits reducing due to new medication. Mila suffered another prolonged seizure resulting in her being put into an induced coma and staying in intensive care at Addenbrooke’s hospital. This all started as a untreated chest infection which led to Adnovirus, this was initially said to be chicken pox. Her liver and kidneys were also affected as a result of this seizure.

When Mila came round the unimaginable had happened, her brain seemed to not be waking up and she had no brain activity. She was still having small seizures.

The doctors were all stumped as to what was going on, they had never seen this before in a TS patient. Even after numerous EEG’s and MRI’s had been carried out, nothing was showing up.

GOSH then noticed swelling within Mila's brain and decided to put her back into a coma to restart her brain. When Mila came round again there wasn’t much change and she had developed Dystonia. (Dystonia is a movement disorder, which causes muscles to contract uncontrollably)

Since waking doctors noticed numerous changes within Mila's brain correlating with nerve damage, from a brain injury leaving her immobile. Doctors explained that any surgery would be impossible. Physio and sensory stimulation are the only things at present which can help encourage any progress.

Mila has now been in Addenbrooke’s Hospital since 7th December 2019 she is looking to be discharged end of April 2020 to go straight to Tadworth rehab centre in Surrey for a further 3 months. (Tadworth is a specialist residential rehabilitation centre for children with brain injuries) During Mila's stay at Tadworth, Mila's parents - supported by close family members will be residing with her.

Friends and family are looking to raise money through various fundraising activities. This is to help fund, a room conversion suitable for Mila’s sensory needs. There are various other things that Mila will need upon her return home, such as a car seat that will be adapted for her needs. A hydrotherapy pool (which will help with her muscle strength, co-ordination & Balance) Mila's home surroundings will need to be adapted to accommodate a wheelchair. Lastly, Laura & Spencer would like to get Mila an epilepsy therapy dog (research show's therapy dogs can detect seizures anywhere from 30seconds to 45mins prior to an episode) Mila's family would also like to make a donation to Addenbrooke’s Hospital and Tadworth once Milas care is complete.

Thank you all for taking the time to read Mila's story.

from all of Laura & Spencer's friends & family x