Olivia needs consistent private therapies and specialist equipment to help her progress to her full potential and to become stronger and more confident in everyday life.
Olivia is aged 7 from Romford. At 9 months Old she was diagnosed with an extremely rare condition called Idic15q. Olivia’s condition does not come alone as it means Olivia suffers with drug resistant seizures having 100’s of seizures a day, Global Development Delay, low muscle tone, cortical visual impairment, autism and sensory processing disorder. Olivia is non verbal and can only take a few steps with support. Olivia will require full time care, extensive therapies and specialised equipment for the rest of her life.
Olivia was born full term via an elective c-section due to her breech positioning. Olivia was a happy healthy baby who fed and slept really well. When Olivia reached 5 months old I began to notice she was no longer progressing and reaching the “normal” milestones. I remember having an overwhelming feeling that something wasn’t right. I took Olivia to hospital refusing to leave. Olivia then went through a number of tests including MRI scans, CT scans, blood tests, eye tests and genetic testing. The tests came back normal, however we were told we would have to wait 3-4 months for the genetic testing results to return and were sent home.
2 months later Olivia began having seizures. I took Olivia to hospital where we then spent the next 8 weeks. Olivia was having up to 30 seizures a day at this point ( that we were aware of ) and the Dr’s and consultants were struggling to control them. Olivia underwent further tests such as Lumbar punctures, EEG’s, more MRI scans, CT scans and again everything was normal except the EEG was showing seizure activity on her brain. The doctors did not know whether Olivia was Epileptic or the seizures were due to an underlying condition.
A month into our hospital stay Olivia‘s genetic results arrived. It was at that moment we were given Olivia’s diagnosis. Although Idic15q is a genetic condition we were told that Olivia’s conditions was actually ‘De Novo’. This means it was not genetically passed on by myself or Olivia’s Dad and could have simply happened to anyone.
We then spent the next month in hospital trying to manage Olivia’s seizures with several different medications. However, nothing was working. We were sent home and seen as outpatients (which was terrifying). A high dose of steroids was then introduced to Olivia’s medicine which thankfully worked, butthis wiped Olivia and her immune system completely out. She was unable to move, swallow, smile and barely stay awake. She contracted infections after infections for the next 18 months and we very nearly lost her during this time.
Due to the large amount of seizures Olivia was having on a daily basis, she began to silently aspirate, which meant she was no longer able to swallow safely. Milk and saliva was going directly onto her lungs. This caused reoccurring chest infections, pneumonia and sepsis. Olivia then had an NG tube through her nose for all feeds and medication. This was in place for a year until a PEG was inserted into Olivia’s belly. Olivia can now eat orally however medication and water flushes are given directly through the peg.
Olivia was seizure free for 2 years. However, she is currently having a maximum of 100 seizures a day. Last summer Olivia was diagnosed with retractable epilepsy. This means it’s medically resistant. We have tried several medications, which have so far been unsuccessful. Our next steps are CBD, which we are hoping will reduce the seizure activity as we know we will never get full control again.
Livi goes through so much on a daily basis, but she is the happiest, sweetest little soul with so much determination. She is always smiling no matter what.
Although there is help through our NHS, it is very limited. And Olivia will always require therapy and specialised equipment that is not always available via our NHS. We all want the best for our children and as Olivia requires a lot more help to live a good quality of life, we are now fundraising for Just4Children to be able to provide Olivia with the ongoing therapies and equipment she requires going forward. Olivia has surpassed so many expectations over the 7 years of her life and that is because of her private therapies we have been able to access so far by the generosity of others and fundraising.
We all know extra therapy sessions and specialised equipment that your fundraising achieves helps Olivia progress cognitively and physically and most importantly improves her quality of life.