We are blown away by the support and generosity so far. Thank you all so much for your contributions to help our little warrior!

We have recently had some new assessments/consultations and there are going to be additional ongoing costs to meets Esmes needs. Private physio is already being funded privately at a cost of over £100 a week.

She also requires a number of other pieces of specialist equipment so we have been advised to reach for the stars with this fundraising campaign.  We now aim to secure her cannabis medication for 18 months and if additional funds are raised to continue to fund her therapy and equipment. As a result the fundraising goal has been increased. 

Esmé, a healthy, happy baby, began having seizures around 6 months old. Despite initial dismissal, her mother trusted her instincts and took her to A&E where epilepsy was diagnosed. 

Powerful medications were prescribed, but they caused severe side effects. Esmé’s body swelled, she lost her smile, and became less responsive. Staying alive meant losing herself.

The next two years were a constant battle. Esmé initially won against the epilepsy, but then a massive seizure struck, followed by more. Medication had to be increased again, leaving her sedated. This pattern repeated with different treatments, achieving only small wins at huge cost to Esmé's quality of life.

Eventually, Esmé was diagnosed with a rare genetic condition affecting only 850 children worldwide: SCN8A mutation. 

Despite the challenges, Esmé showed incredible resilience, wrestling on to come back stronger each time. With the same spirit, Esmés mother fought for the only cannabis-based medication available for children on the NHS. When she got it, it brought a spark back into her little warrior’s eyes and allowed her to reduce other medications that had left her unable to sit up, smile, or even notice the world around her.

However, as a basic, early-generation medication the benefits were temporary. Esmé’s epilepsy fought back. Esmé mother is now attempting to access the more advanced cannabis medications that work better and last longer. But a break-down in the UK system means children like Esmé can’t get an NHS prescription, even though they are legal and approved by NICE. 

The only way Esmé will be able to access this potentially life-saving medication is if she can secure a private prescription. 

£250 will pay for one bottle of cannabis medication formulated specifically for pediatric epilepsy.

£120 will pay for a consultation with a pediatric neurologist who is licensed to prescribe this medication to children.

A private prescription for Esmé is estimated to cost in the region of £1000 per month.

Any extra funds raised will be used to pay for ongoing specialist physiotherapy to help Esmé regain the motor function she has lost due to her epilepsy.

Seizure freedom is unlikely for Esmé, but the question is what kind of life should this courageous child have? Should she be made to struggle on with an unwinnable battle, or should she experience life like other children—filled with laughter and play and able to develop and learn?

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.