Help Elsie Battle Epilepsy

Help Elsie Battle Her Epilepsy

Welcome to Elsie’s donation page to help support her through her struggle with drug resistant epilepsy. As a family, we have thought long and hard about this, but to support our daughter in the best way possible we have to try and raise some money so that we can give her chance to access additional support over and above what we can currently provide for her. Your support would make the world of difference to Elsie, she deserves to be able to live life to her full potential.

Elsie’s Condition

Elsie has a debilitating condition called Infantile Spasms, which is a serious form of Epilepsy and a medical emergency. Elsie continues to have several clusters of seizures each day, each one lasting up to ten minutes, she also has seizures in her sleep so she’s currently going through 100’s of seizures per day. Not only are these seizures exhausting for her little body, infantile spasms and the medications she is on, cause global developmental delay which affects movement, speech, eating, cognitive skills etc. Due to emotional trauma from all the treatments, Elsie is scared of eating orally so is fed a blended diet via a feeding tube. Everything a child can do easily day to day, Elsie struggles with and needs 24/7 care and support which resulted in Hannah giving up her self-made business 2 years ago and it’s likely she won’t be able to return to for the foreseeable future.

Elsie’s History (it’s hard to cram in 2 years of daily struggles into a few sentences but here goes)

Elsie was a happy, smiley little girl reaching all her milestones until one day at 4 months old, Aug-23, she started having seizures, this then escalated to multiple seizures daily over the next few days and thus started our life long journey to help her battle and overcome this cruel disease.

Elsie has spent months at a time in hospital and suffered numerous other illnesses as a result of her disease. She has been on countless medications (some have damaged her and all have severely impairing side effects) and NHS prescribed treatments to try and reduce her seizures but sadly none have had any significant or lasting effect therefore her condition is classed as ‘uncontrolled and drug resistant’. She has had lots of testing done, been poked and prodded, surgery and scanned by numerous machines over the past 2 years and this will sadly continue until she improves. Elsie has not had a cause identified and this means we are limited in the support she can get from the already underfunded and overstretched NHS plus it does not allow us to pinpoint a direct treatment route.

At the start of 2024 we took the decision to look privately at support for her and over the next few months we started some therapies and continue to see improvements, particularly with her physical development.

Since then we have spent every day researching a holistic approach to support her such as food, therapy and supplements all of which have proven positive results not just to help her epilepsy but for her overall health and wellbeing to enable her to have the childhood she deserves and a better quality of life.

We hope you can support Elsie and any contribution no matter the value will be appreciated by us all!

Elsie’s Treatment Plan – sadly no treatment is free and the majority are a significant cost, combined it adds up to tens of thousands of pounds every year.

Our top treatments/therapies we’re hoping to try are;

• We would love to take Elsie for weeks of intensive physio, speech and feeding therapy

• Hyperbaric Oxygen Chamber – to aid her recovery from drug toxicity and boost development

• Physio – we have been taking Elsie to a specialist physio (Chloe at Ribble Valley Children’s Physiotherapy) privately for the last 18 months and she has been doing really well. We’d love to be able to continue and to also book some intensive weeks of this.

• Functional Medicine and CBD – we’re currently working with a practitioner to help improve Elsie’s overall health, focusing on her gut as there are huge links between epilepsy and gut health. We’re also hoping to try CBD as a treatment option

Other treatments we want to be able to/continue to provide that we have seen a benefit to Elsie are;

• Acupuncture, Chiropractor, Osteopath and Craniosacral Therapy