Eighteen month ago Pippa O’Shea was just like any child.

She was living a life of any normal child, having fun with a sparkle in her eyes.

Now it is the opposite as she is unable to speak, has absent seizures, severe fatigue, photosensitivity, cognitive difficulties and an inability to play, write or think. She is unable to attend school.

Suffering

Pippa has been suffering for the last 18 months and an MRI in September 2021 showed a change in the white matter in her brain.

The five year old had lost her speech and while waiting for further examinations lost all the skills she once had.

Her parents, Julie and Mark, decided, after waiting for months, to go private.

Then after visiting the London children’s hospital and after running lots of tests, they thought Pippa had a type of encephalopathy (a disease in which the functioning of the brain is affected by some agent or condition) and it was recommended Pippa see a paediatric Neurologist in Portland hospital, where they could take her as an inpatient.

They discovered after an EEG (electroencephalogram) was carried out that Pippa had seizure activity in her brain all day and night; a lumbar puncture also showed elevated protein in her spinal fluid.

Julie and Mark paid £35,000 for two of these tests and have been self-funding trips over to London since, as their health insurance does not cover them to get their daughter the treatment she needs.

Best place

Speaking from London, where they have been since Monday, Julie said Pippa was not in “great form” but the family know this is the best place for her.

Julie explained how Pippa had been given a steroid treatment to see how she responded to it before being admitted to the hospital and the positive effect it had on her: “She responded so well, it gave us a glimmer of hope as to how this treatment could help her.

“She was able to go to the park and she was playing and a lot of her speech came back, she just came on well in a short time period.

“Once she came off that she went downhill very quickly again. She’s not in great form at the minute at all. She is sleeping for hours during the day and for a five year old that is not normal.”

Last Thursday a GoFundMe page was set up by Julie’s cousin to raise funds for Pippa’s treatment and at the time of going to print, there was £60,789 raised.

Massive help

This has been a massive help for the O’Shea family and Julie was just blown away by the support she and her family has received.

“It’s unreal. Obviously, with having a business you are going to have that step up with knowing so many people but I never expected to see that kind of money, people are so good.”

It means that the family can go ahead and get Pippa the treatment she needs and takes away a lot of the stress for the family.

“I had a phone call last Thursday with our doctor here in London and the best thing for Pippa was to get her straight to London.

“We were coming here regardless for this appointment, I suppose it’s just a case of we don’t know when this is going to end.

“It means we can fast forward, whatever Pippa needs we can give it to her because we have all that emergency fund.”

No diagnosis

Julie, Mark and Pippa will be in London until the end of the week when they will meet with her doctor to discuss the next step in the treatment.

As of yet, there has been no diagnosis of Pippa’s condition but it is likely to be a form of developmental epileptic encephalopathy.

Until results from genetics tests come back they will have to wait.

But the family are comforted by the support they have received and has the peace of mind that they will be able to get Pippa the best help she needs because of this generosity.

“The support in every aspect people are so good - praying for her, offering to help with my two other children.

“I want to thank my mum, Sinead, for her support in looking after my two other daughters while we stay in London, she’s made the process easier for us.

“People are so kind, the community is unbelievable. There are no words for it really,” added Julie.

To donate to Pippa’s road to recovery go to https://tinyurl.com/49p6bdyc