FIND or Give SUPPORT THROUGH OUR COMMUNITY NOTICE BOARD

   Caleb was a totally normally, happy developing 3-year-old. On the 2nd of august 2019, our world came crashing down. I had a phone call from Caleb’s dad whilst in work to tell me to meet him at the hospital straight away. When I asked why, he said that they were in an ambulance and Caleb was having seizures that weren’t stopping. 

From this point we spent around a month in hospital, undertaking numerous tests. MRI, CT, bloods, lumbar puncture, none of which gave a reason for why this started so abruptly.

So Caleb was diagnosed with epilepsy, but none of the doctors could understand how it came on so suddenly and why it couldn’t be controlled. Caleb could have up to 60 seizures a day. He’d also go into what’s called ‘non convulsive status’. This is when there is constant brain seizure activity, but no outwards signs. Caleb can’t talk when this is happening, it’s like he’s not in his own body, he’s checked out. It’s terrifying to watch and wait for him to come back. This can last for days. 

Over the next two years, we would undergo testing by Young Epilepsy in Surrey, and Great Ormond Street Children’s Hospital (GOSH). This was in the hope to pursue a surgical option. Caleb endured months and months of PET scans, MRIs, prolonged video monitoring and ultimately waiting.

Finally, Caleb had an invasive surgery called a stereo EEG in GOSH. After this test, they gave us the news that they could not find where his seizures were originating, therefore couldn’t help us any further. We were broken.

We didn’t give up, we sought a second opinion from a US brain surgeon. My husband was trawling the internet and came across a YouTube webinar from Dr. Luke Tomycz of New Jersey (NJ). He works from Hackensack Meridian hospital, NJ. He emailed us back almost straight away saying he thought he could help us. We jumped at the chance. 

A few months went by after speaking with him over Zoom calls and sending Caleb’s scans and test results. We finally went to NJ in January 2022. This was terrifying as we didn’t know, one what the outcome would be for Caleb, but two what financial costs we would incur. In our minds we were prepared to lose everything for the chance to help him.

Covid restrictions were also very much still in place at this time. We isolated strictly over Xmas as we didn’t want to risk our chances of catching covid and not being able to go.

We arrived at Heathrow airport, absolute nervous wrecks at the whole situation, and having to leave my 2-year-old at home with nanny whilst we did this.

We then receive a ton of messages from Dr. Tomycz asking us if there is any way we can postpone our trip by a few weeks as he had just received a message from the state board that all non emergency surgeries should be cancelled due to new covid guidance. It felt as if we’d been punched in the stomach. We couldn’t believe it.

After all this we decided to still get on the plane, even if we could just meet him and get some tests done we thought this would still be worthwhile.

We arrived at JFK airport then travelled to NJ. We had a phone call with him a few hours later and he explained ‘I’m glad you still came, we will try our best to make this work, I’ll see what I can do’. 

We met with Dr Tomycz and his wife Mariya Soroka. We spoke about everything that he had planned for Caleb and we trusted him immediately. The next day we admitted Caleb into the hospital. It was like a whirlwind. Every test that Caleb had waited months/year for here, he had done within 10 days. 

They came to the conclusion that Caleb’s seizures were arising from the left frontal lobe of his brain due to cortical dysplasia. This enabled them to remove most of the bad area. Post surgery, Caleb was doing well for around 6 months, only having seizures every 10 days in comparisons to multiple nightly previously. But since then they have risen to around 8-10 a night. Although this is still less than when he was first diagnosed, it’s still too much for him to live anything close to a normal life.

Dr Tomycz advised us a MEG scan would be really helpful. We’d asked for this on a few occasions on the NHS but were always told no. We ended up funding a MEG scan privately ourselves, in Birmingham and Belgium. 

The results of the MEG scan have been really helpful in highlighting an area of seizure focus. Dr Tomycz now wants to perform another surgery in the belief that he can help Caleb much further. This could save Caleb’s life. If he continues to have multiple seizures a day, his future does not look promising. Having used all of ours and families’ savings last time, we are now resorting to trying to raise funds

The GoFundMe link is : https://gofund.me/920eee55

Instagram - @caleb_orion_2015

Facebook - Caleb Orion Seize the moment 

TikTok - @Caleb_orion

  Ally goes to the park with her mum, she struggles with all the sensory input in the park and gets upset. Ally meets another acorn who has autism and he shows her how he copes, helping her find a solution to all of the sensory difficulties; and they become friends.

Preface 

This book is about a sensory overload and how it is hard for those with autism to cope with all the different senses, such as sound, sight, touch and smell. It shows potential solutions for dealing with sensory difficulties, helping parents to help their child under similar circumstances.