Life is full of unexpected twists and turns.

September 2017 brought a drastic change to our lives. It's been an incredibly difficult journey, but we're slowly finding our new normal, however that could be taken, if we can't cover costs.

In July 2017, Charlie was born, and although there was a little complication requiring two days in NICU, he was a healthy baby—or so we thought.

Ten weeks later, Charlie was diagnosed with Infantile Spasms, a rare form of infant epilepsy. It’s critical to gain control of the seizures as the brain is still in the early stages of development and change. Failure to do so can result in life-changing circumstances.

Charlie responded well to steroids and an anti-epileptic drug specifically for his diagnosis. However, the steroids were at an adult dose, which had a heavy impact on his organs and caused side effects like excess fluid retention. Charlie was barely recognizable, but despite this, he was seizure-free. However, this was only ever going to be a short-term solution.

Upon weaning on January 4th, 2018, Charlie relapsed and suffered a cluster of seizures. We immediately took him to the assessment unit, but that day marked the beginning of our new normal.

Charlie was prescribed a multitude of anti-epileptics. Each one brought new hope that we'd regain the control we had, but the seizures remained relentless in their number.

We were referred to Addenbrookes for an emergency ketogenic diet, which involved us measuring ingredients and removing carbohydrates from his diet. He developed strong ketones, despite not being keen on the recipes. Hope faded when it became clear that the diet had no impact on seizure control. Charlie had every test, including lumbar punctures and genetic tests, to try and determine a cause. Results kept returning normal, which led to a diagnosis of idiopathic epilepsy (cause unknown).

During this period, Charlie was suffering from over 100 seizures per day. He was missing milestones and slowly fading. He was unresponsive to his surroundings and took no interest in objects an infant usually would. He was in an unstoppable loop of seizing, which exhausted his tiny body. On top of that, the sedating anti-epileptics caused him to sleep, which triggered more seizures.

The next round of anti-epileptics began, repeating what had already failed. Late in 2018 into 2019, we were on the pathway to brain surgery. After many tests and stays at Great Ormond Street Hospital and Evelina in London, the tests gave a clearer picture of the sources of excited neurons causing the seizures. But once again, hope was dashed when, after a multi-disciplinary meeting with surgeons and neurologists, the decision was made that surgery would likely not help with seizure control.

By 2019, we had reached the end of what the NHS could offer. There were a few options left, but Charlie's quality of life was now paramount, and it was felt by all that these options wouldn't aid seizure control and could be detrimental to what we were trying to protect.

As new parents (Charlie is our first), our world was turned upside down. It was clear his future would be very different from the normal, full of uncertainty and at high risk of Sudden Unexpected Death in Epilepsy (SUDEP).

We weren't going to give up, though. We spent the next several months researching alternative treatments available in other countries. It was during this research that a campaign was underway in the UK to allow access to cannabis, which research had shown to be of great benefit to children with severe epilepsy.

In November 2018, the law changed, allowing specialist clinicians to prescribe cannabis. Renewed hope was raised—there was now another option available with good clinical evidence of efficacy and low side effects. We began discussing this as an option for Charlie with his NHS team. They were aware that CBD could be beneficial, although they didn't appear to know much about the subject and were reliant on guidance from governing bodies, which gave a clear "no" to prescribing.

With the NHS not an option, we learned of a neurologist prescribing at Portland Street Hospital. We arranged a private consultation, and in May 2019, we returned to London. On that day, Charlie's seizures were particularly bad, and during the consultation, he had a number of clusters. The private neurologist was keen to help and agreed that, given the severity of the seizures and the number of failed medicines, we should give it a shot.

Charlie was prescribed an advanced cannabis oil from Holland, though it came with a price tag of £500 per 10ml bottle. Scraping together accessible inheritance, we slowly began administering the oil twice a day.

A few months later, on a bright, sunny Sunday, Charlie was alert, bright, and happy—taking in his surroundings and on form. We went for a walk locally, and it dawned on us that we hadn't seen a single seizure. That day, he was seizure-free.

In the following weeks and months, seizures returned but were significantly reduced in number and severity. A bad day now meant 20 seizures lasting only seconds. There was an 85% reduction in seizures and a significant improvement in his quality of life. We began to meet Charlie and see his personality shine through for the first time in his life.

With such a great response, we had to continue funding his prescription. As funds became tighter, we decided to fly to Holland to pick up his prescription directly from the Dutch pharmacy. This saved us £8,000, although it was illegal to bring his medication back into the UK without the proper licenses.

In September 2019, Charlie had an appointment with his pediatric consultant, who had known him since his first visit to the hospital. He was so pleased to see Charlie responding—great eye contact and interacting with his surroundings. After a 45-minute appointment, Charlie had no seizures. It was the first time the consultant had been with Charlie and not seen him seize. He asked what had changed, and we told him we had a private prescription for cannabis. He smiled and said, "Great work, well done for not giving up." We asked if he'd be able to prescribe it on the NHS, and his response was that he would need further evidence to support such a decision.

In October 2019, Charlie had an EEG. The results showed a significant reduction in background epileptic activity compared to all previous tests. This was the evidence we needed. However, despite both his neurologist and consultant agreeing they'd prescribe if they could, they were being told they couldn't.

Upon writing to the CEO of Addenbrookes, we were told that National Institute for Health and Care Excellence (NICE) guidance prevented the trust from prescribing. This was the beginning of an 18-month legal challenge, which resulted in NICE clarifying that in circumstances like Charlie's, where the benefit outweighs the risk, advanced cannabis medicines can be prescribed. However, reality remained that they could not, due to other guidance and funding issues preventing access.

During this time, the strain of covering the costs of his prescription became too much. We couldn’t continue to cover such high costs with other priorities in Charlie’s care needing attention. After long discussions and an educated risk, we switched to a new oil that was available in the UK. It was of a higher concentration, requiring less oil and much cheaper per bottle. Fortunately, it worked in our favor, and Charlie’s seizure control improved further.

Three years later, in 2023, Charlie is now six. He’s in a specialist school with 100% attendance, continuing to develop, slowly learning to walk and make independent choices. He still faces incredible challenges with his development, but he's a bright, cheeky, adorable, and happy little chap.

But life has thrown us yet another curveball.

The oil he's been prescribed for the past three years is no longer available in the UK. Despite our best efforts to avoid changing medications, we have no choice.

With few available options, we've been prescribed another oil. Sadly, it hasn’t been as effective, with an increase in seizures and their duration. We'd like to return to the Dutch oil, but the costs remain a barrier, forcing us to fundraise to support his prescription.

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7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.

If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objects. If in those circumstances we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hope’s charitable objectives, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.