I have a very dear friend whose daughter is severely unwell and needs all our help to facilitate her return home from hospital and to make her very challenging life easier to navigate into adulthood. I would much appreciate you taking the time to read this incredibly sad story and any donations would be hugely appreciated by Megan and her family.

This is Megan’s story, written with her Mum, which I share with their permission........

In September 2018, aged 13, Megan developed whooping cough, but despite best efforts, she never got better and this seemingly was just the start of her deterioration having been diagnosed with severe M.E.

Myalgic Encephalomyelitis (M.E.) is a long-term (chronic) condition that causes symptoms affecting many body systems including the immune system, but the most common symptoms of ME are post-exertional malaise (even after minimal exertion), profound fatigue and pain.

More recently, Megan has also been diagnosed with the condition FND – Functional Neurological Disorder is an illness where there is a problem with the functioning of the nervous system and how the brain and body sends and/or receives signals. The brain pathways are interrupted, it is a recognised neurological condition, which is as debilitating as MS, however the treatment and understanding of FND is still quite limited.

Before becoming unwell, Megan was a very happy, popular, sporty teenager, thriving academically and regularly represented her school for netball and hockey. Sadly, her illness has meant that she had to leave school at age 14, but with the help of 2 excellent tutors, over the course of a year, with half an hour for each subject, at home, Megan pushed herself and sat English and Maths GCSE, incredibly gaining an A in each!

By contrast, in December 2022 Megan will be 18, having been house bound since January 2019 (bedbound for most of that time) Over the course of 2021, Megan’s condition deteriorated further, so she was taken into hospital in the July, Megan has now been in hospital for over 14 months. She can no longer move any part of her body, other than open her mouth and facial expressions, she has no head control or core strength, her legs are locked fully extended, her left hand is stuck in a fist, she isn’t able to open her eyes or speak. Megan is fed through an NG feeding tube and cannot eat or drink. She has a headache every day and is treated for constant pain. Megan can hear perfectly well and of late, understands everything that is going on around her, but very cruelly has become ‘trapped’ in her own body.

Despite all of Megan’s huge daily struggles, she has managed largely to maintain positive and hopeful for her future and amazingly still has an incredible sense of humour and the most amazing smile. She still is a very thoughtful and caring person, with empathy and a selflessness beyond her years.

Megan is currently in a Neurological Rehab Unit and has an excellent team of Doctors and Nurses and Rehab Specialists around her. She is well known in the unit and often has the team laughing and joking with her. Megan is very resourceful and despite being unable to speak, she spells out words by having the alphabet read out to her and she opens her mouth when it’s the correct letter, this is time consuming and exhausting for Megan, but her perseverance is unbelievable and she gets her point across. Megan has even been able to make up lots of positive quotes, with the help of Speech and Language (SaLT), OT and Physio, which have been displayed in all of the wards around the hospital. Megan hopes that her words of hope and positivity will help others who are struggling, no matter what they are in hospital for. More recently, with the help of her Music Therapist and SaLT and the Hospital Charity, a short video has been put together sharing some of Megan’s quotes. @ TheGrandAppeal platforms on Instagram / Twitter & Facebook

Understandably Megan’s situation has had a profound effect on our family and our lives have literally been turned on their heads. She has 2 wonderful doting Sisters who would like nothing more than to have their big Sister back and well!

Thank you for taking the time to read about Megan’s story. M.E and FND are both very difficult and often misunderstood illnesses that affect over 250,000 and 50,000 people in the UK respectively. That is why it’s so important to raise awareness for Megan and others suffering. If you have time and would like to know more information, please see the ME Association or neurosystems.org websites.

Towards the end of 2022, Megan will be discharged from hospital as she will be too old to stay in her current setting and come home, until which time a place in an adult specialist Rehab Unit becomes available.

Megan is going to need a lot of help and resources to enable her to live a more fulfilling life and build her future.

In order for Megan to come home, drastic building work and changes are going to need to be done to the family home, to accommodate her,, (hopefully she will qualify for a Disabilty Facilities Grant, which will help hugely, but not cover all of the work and expenses) some of which include a downstairs wet room, electric ceiling hoists, taking out part of the entrance way to the house and having a wider front door fitted and a new ramp to enable the ambulance crew easier access to the property (Megan cannot currently travel in a vehicle other than an ambulance) and to be able to get Megan out in a wheelchair. New access doors to the garden, to give Megan variety in where she spends her time.

Megan is going need a very specialised electric wheelchair, that can recline, support her neck and head and her extended legs, whilst being comfortable. She is going to require lots of help with communication aids and help later on with accessing education.

When Megan does go back into hospital, her parents and siblings are going to need help to fund the travelling expenses and overnight accommodation to visit her as often as possible.

This is by no means an exhaustive list of what help the family need, but anything anyone can donate would be hugely appreciated.