Mary’s story: “I’m grateful for every day we get together”
When Mary was five months old, she was diagnosed with hydrocephalus – a condition that has resulted in brain surgery five times. Then, at just five years old, Mary was further diagnosed with MPPH syndrome – a developmental brain disorder caused by an extremely rare genetic mutation. This is Mary’s story, told by her mum Donna.
Mary has faced lots of challenges in her young life, but she hasn’t let her diagnoses define her. Now 10 years old, she is a happy, sociable, lively and friendly young lady who loves being around her family.
As well as her diagnoses, she also suffers from drug-resistant epilepsy, seizures and ketotic hypoglycemia (low blood sugar levels).
When Mary was younger, she was in and out of hospital every six weeks, with her family living between their home and the hospital. But Mary’s symptoms have stabilized over the last couple of years. Now Donna, Mary and Mary’s seven siblings have settled into a new, calmer routine.
“Life is still full of its ups and downs, but it is much quieter now than it was when Mary was younger, and I’m grateful. But that means I now find it even more upsetting when she gets ill. When your child is ill or having seizures regularly, it becomes the norm and you almost become desensitized to it. Now, it’s not the norm, and I don’t feel desensitized anymore. The emotions are quite raw.”
Although life for Mary’s family has been challenging, they are not alone. The whole family have been supported by their local children’s hospice since 2018, with respite stays, sibling support, listening support and a helping hand when needed.
“Our hospice has been a massive lifeline. It’s made up of people who understand me and Mary, and I know I can trust anyone there to keep Mary safe. They always listen and they’re always there. Nothing is too big for them.”
Getting support
Donna first contacted our Helpline in September 2018, when Mary was preparing to start school. “I was so worried about Mary starting school and so I spoke for an hour about my fears. It made a tremendous difference, having somebody to listen.”
We have been there to support Mary and her family ever since, with a listening ear, financial support and advice, and connecting them with other families caring for a seriously ill child.
Donna is a member of the Together for Short Lives family Facebook group – a supportive community for families caring for a seriously ill child, helping families to connect, share and support one another.
You get to know faces in the Facebook group and it really feels like I’m part of a community. It helps to know that other families have similar struggles, that everyone else understands because we’re all in the same boat. It’s such a supportive community and this opportunity to connect with other families like mine is so valuable.
Earlier this year, Donna received the good news that their application for a motability vehicle to help Mary get around had been accepted. But the news was both welcome and worrying: the vehicle would be electric and would need overnight charging at home. With the increasing cost of living and energy bills spiralling, Donna turned to Together for Short Lives again for support.
“I booked a call with Together for Short Lives’ Energy Adviser and it was the best thing I could have done. Steve encouraged me to contact my energy provider and move from my pre-payment meter to a direct debit payment. Because of that, I’ve been able to take advantage of the low night tariff to charge our electric motability vehicle. Charging the car at night has made a massive difference and we’ve saved so much, compared to what we would have spent if we were still on the pre-payment tariff.”
Steve also arranged for the family to receive a fuel voucher, which Donna put towards reducing the running costs of Mary’s electric bed.
“I don’t know where we’d be without the support we’ve received. Even now, all these years later, I know there is still someone at the other end of the phone that I can turn to for help. Life with a seriously ill child can be overwhelming. But knowing there are people you can reach out to – and who really understand you – when you need support is lifechanging.
“The support I’ve received has allowed me to spend more time with Mary, as a family, and less time worrying about the other things. I’m so aware that time is precious and I’m grateful for every day we get together.”