Background

Meghan is ten years old and lives in Cheshire with her mum Amanda and dad Michael. Meghan has cerebral palsy with a severe developmental delay due to periventricular nodular heterotopia and extensive polymicrogyria.

Periventricular nodular heterotopia refers to a brain malfunction whilst polymicrogyria is a condition that affects the development of the brain, and usually occurs before birth.

 

Meghan’s condition

In June of 2019 Meghan was diagnosed with cardiofaciocutaneous syndrome, a disorder that affects many parts of Meghan’s body. Amanda and Michael also explain that Meghan has seizures daily. “Sometimes up to four times a day. She has cyclic vomiting syndrome and cortical visual impairment.”

“Meghan is non-verbal and doesn’t understand language so we communicate with her through facial expressions and can interpret what she might need or want through certain cries and noises that she makes."

"She can’t walk either, and can’t weight bear independently, so she bunny hops to move around. She suffers contractures, mainly in her knees, which can cause her lots of pain. But with no sense of danger she has to be watched continuously, and her bunny hopping is confined to our living room where her sensory equipment is. Other places in the home would be too dangerous.”

“Meghan has specialised seating at home and ceiling track hoists. She uses a standing frame daily and sleeps in a specialised padded one metre high-sided bed. We have a visual monitor on her all night and also an epilepsy sensor under the mattress. Sudden unexpected death in epilepsy (SUDEP) is very real for Meghan as her seizures cannot be controlled.”

“Meghan has been on a ketogenic diet almost two years now. Meghan is pump fed via her gastronomy tube with specialised milk. She is still having weekly seizures up to maybe three a week and using rescue meds but nowhere near as much as before the ketogenic diet.”

 

Daily challenges for Meghan and her family

Amanda and Michael explain that the most challenging aspect of daily life is communication. “If Meghan is poorly, unhappy with something, or is in pain, she can’t tell us and we have to go through an elimination process.”

“She recently had a hospital stay for a week. She had a chest infection pneumonia she was on oxygen for six days. Now because of this her threshold has lowered so any sign of a cold or temperature or generally under the weather she has to have precautionary antibiotics.”

I can also be difficult to find things that Meghan likes to do. “She is very limited in her daily activities and play. She loves to listen to music on YouTube but only familiar songs."

"If she gets really distressed Amanda will sing songs to Meghan – the familiarity calms her down. She doesn’t like us to leave her anywhere different as she can become distressed, so if she isn’t at school she is with us 24/7.”

Due to Meghan’s conditions, she has to take a lot of medication daily. “She has three medications for epilepsy, one for cyclical vomiting and three for her reflux. She also has emergency medication for her seizures and extreme vomiting.”

Hospital appointments can take up large parts of Meghan’s day. “She visits neurology, gastroenterology, orthopaedic, ophthalmology and audiology departments.” Because of a recent diagnosis she now has to visit the cardiology department, and she will be visiting the dermatology department as her new condition is linked to melanoma. “Meghan also has lots of blood tests for the ketogenic diet.”

 

School and support

 

At the start of lockdown Meghan had to be taken out of school as she is clinically vulnerable. “We took her out in March and she didn’t go back until April the following year. Thankfully they’re still in bubbles which helps ease some of the worry.”

“Meghan attends a special school and travels every day on transport. If we take her to school she gets distressed when we get there as it’s a change in her routine. Meghan’s development age is under 11 months.”

Amanda and Michael tell us that they have both had to stop working to care for Meghan. “Michael was a self-employed painter and decorator, but the stress of Meghan being medically poorly, especially with her seizures, has meant that he now has high blood pressure from worrying about her. We don’t sleep at night because we worry that could she pass away in her sleep due to SUDEP.”

Our life is Meghan now. We just want her to be the happiest she can be.

“In February this year I was diagnosed with two slipped discs a spinal stenosis and arthritis of the spine so now I have continuing care carers coming in to help a few times a week especially at bathing time. Meghan's disability social worker organised it and it started in August of this year. Hopefully the help will prevent me having to have surgery.”

“Meghan was also accepted at the hospice The Donna Louise. But because of the pandemic we have not been able to visit yet but the nurses have been out to visit and offer support on three occasions, and hopefully Meghan will be able to visit the hospice soon.”

 

How we helped

Amanda and Michael heard about Family Fund in 2013. The family’s first grant was for driving lessons. “Without Family Fund Amanda would never have been able to afford the lessons.”

In 2015 they applied for a specialised swing. The family have also received grants for a shed to store Meghan’s equipment. Most recently, Amanda and Michael applied for sensory toys, as they help with Meghan’s play and development, and provide a safe space for her.

 

How it’s made a difference

“The sensory toys have been great. We got a bubble tube and a large beanbag, which Meghan loves and uses daily. We also got some fibre optics and chewing toys as Meghan loves chewing everything.”

“It has been a very important part of Meghan's development and her life. Our living room is more of a sensory room!”

This year Amanda and Michael got Meghan a sensory den, lights and a padded bubble mirror. “We noticed from school photos that Meghan was enjoying looking at the lights on a dark background. This was a milestone in Meghan’s development. She has also recently started taking notice of her reflection, and that’s thanks to the mirror we were able to get with the grant. It is so lovely to see her getting enjoyment out of playing.”

“The grants have made a massive difference to us as a family, especially to Meghan’s development. Specialised toys are so expensive and we would never be able to afford them.

"Meghan wouldn’t understand mainstream toys as her play ability is so limited, and they aren’t made robustly enough for her as she chews everything. The hideaway den we were able to get with the grant is padded which means Meghan can play safely.

"She can lie in there chewing her toys and watching the laser lights. Her relaxation time is through her sensory toys and our living room is like a sensory room. But we don’t mind as long as Meghan is happy.”

The Family Fund grants are priceless to us, as is the smile on Meghan’s face.

 

Find out how to apply for a Family Fund grant

Read more family stories here