Pictures for children with ME/CF

Pictures for children with ME / CFS

At the beginning of 2019 my daughter Rebecca fell ill, and was practically bed bound for months. When all the blood tests came back negative I started to fear that this could be ME/CFS but when I mentioned it to the paediatrician I was laughed at. “ME only affects people over 30” she said. However, we finally managed to get a diagnosis of “post viral fatigue in evolution towards CFS” and when I found a group on Facebook "Parents of children with ME/CFS", I was astounded to find out just how many children there were who suffer from this horrible, debilitating illness. The parents on the group greeted me warmly; told me “This is the most supportive club you never wanted to be a part of” and for the last year I have shared in their little joys and frequent sorrows. With time on my hands during lockdown and its aftermath, I decided to give something back to the group and try at the same time to raise awareness about this chronic illness which is so little understood. So I started the project “Pets for Kids with ME”, offering portraits of beloved pets who have been constant companions to these children. It should be noted that because of the chronic nature of the illness some of these "children" are now young adults who were diagnosed years ago.

Here you can see the portraits and read about their young owners and go to ME Research UK where donations can be made towards the chronically underfunded research.

Alex's Dog

After being hospitalised with Swine Flu, Alex had years of declining health before he suddenly became very ill in 2014 aged 11 years old and he was diagnosed with M.E. The following seven years have been nothing short of horrific. Alex is bed bound, suffering 24 hours a day with an horrendous multitude of debilitating and disabling symptoms. M.E has also caused him to develop additional conditions of PoTS, migraines and, unsurprisingly given his situation, anxiety and depression.

Alex has been too ill for any form of education since he was 11, he has lost all his friends and has had none of the fun, independent and exciting life that he should have had through his teenage years. Alex will shortly turn 18 and instead of being out celebrating with friends like other 18 year olds he will be in bed as usual and very very ill...sadly there is never a break from M.E not even to allow him to celebrate such a milestone birthday.

Rosie is his beautiful little dog who is a constant companion to Alex. She instinctively knows that she needs to be gentle and calm with him and she is such a huge comfort to Alex, and the rest of the family.

Makayla's Horse

Makayla was a busy, active 8 year old child swimming ,dancing, baton twirling, doing drama and horse riding. Then one morning all that changed at the drop of a hat. She became unwell and half a day at school would put her in bed for a week. Finally she was diagnosed with M.E and she had to stop all her hobbies. It was felt that to lose her beloved horse would not help her it was decided to keep him. Some days she couldn’t manage to go down to see him, other days she just sat with him, sometimes she was able to ride but most of all he was her friend, someone she could talk to with no questions asked, someone who would let her cry with no judgment, someone to just give her a push when she needed it but all unconditionally. M.E has taken so much from her but Dave her horse has helped keep her hope alive.

Lucy's Dog

Lucy has been unwell since she was 8 years old when she was knocked down in a hit and run accident. Consequently she suffered years of CRPS (Complex Regional Pain Syndrome), with lots of hospital stays and treatment and although she has been in remission from CRPS for over 18 months now, she is left with chronic fatigue syndrome and fibromyalgia. Lucy is now 16 and hasn’t had any mainstream education since year 6. She was home tutored for a long time and now she is starting college in a few weeks in the hope of getting back into mainstream education. Lucy’s love in life is animals, more specifically dogs, but she adores all animals and she wants to devote her life to caring for them in whatever capacity she can. Her dog Murphy is her best friend in the world.

Tindra's Cat

When Tindra was 12 she started to experience pain in her joints, which doctors said were growing pains. After three years of these pains, she fell very ill one day after a sports class in school. She, who was always bubbly and outgoing, came home from class fatigued, went to bed with a high fever for three days - and after that everything changed. She could not do sports or exercise and got a temperature everytime she ran.

Doctors were sceptical, so the family went to a specialist who evaluated her pain, condition and history, and gave her a diagnosis of both fibromyalgia and ME. They then understood that exercise worsened her condition and that they had to adapt. It was really hard for her teachers and classmates to understand what she was going through (even today they still don't understand) and she lost a lot of friends because she could not "keep up". However, she never gave up and today she is determined to get in to nursing school and continue with her dancing, which she loves. Everything needs to be paced in order for her not to crash but she has such a great spirit, has gained some friends in the ME community, and always finds ways to overcome pain and fatigue.

Some days are worse than others but she is grateful for every bit of it and, despite it all, the family know that she will achieve all of her dreams.

Amy's Hedgehog

Amy was a bouncy lively girl up to the age of 12 when she caught scarlet fever and was never the same again. After a a long battle, with school labelling her as a truant and her mum being threatened with fines, Amy was finally diagnosed at the age of 14. There are weeks when Amy goes into sleep reversal (which is a common symptom of ME/CFS) where she sleeps all day and is awake at night. The illness has caused her to suffer anxiety, meaning that even when she can go outside she panics about being in crowds and around people she doesn't know. She attends a hospital school six hours a week, spread over three days, for English and Maths GSCEs, and is now entering year 11. She gets upset at the thought of a career as she will only have 2 GSCEs and she is behind on them. Pocahontas the hedgehog, and other pets, help a lot while she feeds and cleans them, which gives her a sense of importance and reminds her that she is capable of doing things. Her mum (who also suffers from ME) still believes that one day she will have her Amy back.

Joel's Cats

Joel is almost 15 years old. He has always had health issues on and off as well as ‘faltering growth’, along with Asthma. However, he was an active child, who had a good social circle, loved to do stunts on his scooter and flips and tricks on and off the trampoline. Three years ago he had emergency traumatic surgery. The combination of the stress this induced and the general anaesthetic, triggered ME/CFS. Since then his health and symptoms have progressively deteriorated, with him also developing Hypertension along the way. He has been unable to attend school for over a year now and has no social life or friends. He says his only friends are his cats; Lucy and Lily. They are literally his saviours. They keep him company whilst he is stuck in his bed or his room. Joel suffers with debilitating fatigue, muscle weakness, pain, heart palpitations, chest discomfort and many other symptoms. All he wants to do is to be a normal teenager, but this condition is currently denying him that. Joel is very mature for his age and his family remain as positive as possible for the future.

Megan's Dogs

Megan is 18 years old and became ill at the age of 11. After years of hospital appointments, and being told it was all in her head, a doctor finally diagnosed her with CFS. Her health has been up and down since. From not being able to even lift her head off the pillow and fully bed bound in a dark noiseless room to eventually attending college full time. Unfortunately since last year her health has deteriorated again and she suffers with pain, nausea and can no longer walk. She also suffers from terrible brain fog to the point of sometimes forgetting how to pick up a knife and fork. Remarkably, she remains a very determined and mentally strong person. Most of all she hates the fatigue.

Miles's Rabbit

Miles is 17 years old and has been housebound for four years. He has not attended school since year 8. Miles was a sporty, sociable and popular kid who started having difficulty sleeping, complained of being thirsty all the time, and had aching knees and intense tension headaches. Then, after about eight months of these symptoms, he came down with a virus, which was possibly glandular fever, and has not recovered. He has remained in contact with his old school friends which a testament to his amazing personality. He has missed so much of his teenage years but rarely complains. What a wonderful, resilient person he will grow to be. His closest companion is his bunny Wilson, who doesn’t demand anything from Miles and is just happy to sit with him all day and keep him company.

Amy's Ferret

Amy first became ill when she was 11 after a viral infection. The school pushed for her to continue school attendance and she became so severely ill that by the age of 12 she needed to use a wheelchair. There followed a very stressful period of dispute with the school but eventually, with the help of the ME support group The Tymes Trust and the online educational institution Nisai, Amy managed to get 5 GSCEs with a combination of minimal school attendance and online lessons. With typical determination and lots of support Amy then went on to college and now at the age of 20 has completed her first year of university with excellent results. Despite it all Amy is an empathetic and positive person who believes life is a precious gift, even if it has to be managed a little differently.

Katie's Horse

Katie is 14 and has had ME for almost seven years. She’s missed entire school years and managed some school part time. She’s missed birthday parties and developing relationships with her peers. She works hard at her school work when she can and she is hoping to sit five GCSEs. She’s missing out on planning for the future because doesn’t know how her health will be. Katie constantly has a headache that varies from mild to severe, constant fatigue, general all over pain, tremors in her hands and feet and dizziness. Katie started riding five years ago and immediately fell in love with horses. She has maintained a degree of physical fitness through riding and will just cuddle her horse if she doesn’t feel up to riding. You can't overdose on vitamin H!

Beth's Cat

Beth was an active 13 year old who ran long distance, loved bike rides and playing football. Then following traumatic surgery and subsequent infections her life changed overnight. Beth had abdominal pain, migraine headaches, 24/7 nausea, pains in her muscles and joints and a dreadful debilitating fatigue. Although Beth tried to force herself into school, all of her symptoms became more severe and it soon became apparent that Beth was too ill for any kind of education. Beth's M.E stayed severe for two years. At age 16, Beth was able to have online lessons but could only manage 1 x 20 min lesson a day. Beth took 5 GCSEs at home and then, with a lot of support and using a wheelchair, she went to college and studied children's play learning and development. Beth is now 20 and at University studying primary education but she still has M.E and dealing with the symptoms is a daily struggle.

Alissa's Cat

Alissa is 10. She’s been ill for two years and was diagnosed a year ago. At best she spends half days at school and the rest of the day on the sofa or in bed. At worst she doesn’t leave her room for days at a time. She had to give up dancing and choir and although she loves having friends round she is quickly exhausted. Her sister, who’s 7, says it’s like she was enchanted by a wicked fairy but hopes that now the spell is lifting. Let’s hope so Lissy!

Sasha's Cat

Sasha is 17. She was diagnosed at 13 but has had symptoms since she was about 7. She used to dance competitively and danced at home all the time, so it broke her heart when she couldn’t do it anymore. She has missed most of her education and couldn’t sit any exams. Her illness has also really affected her mental health and recently she has been in and out of hospital.

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