By Catherine McKinney
Until last year, we followed the same pattern of care for Eliza each day. We both got up early. Ross would go downstairs to get Eliza up while I sorted out our other three
Eliza sleeps in an adapted bed. We needed this bed so badly but the day it arrived, I sat down and cried. Who wants their child’s first “big bed” to look like a high-sided cage with padding and locks?
Ross would lift Eliza from her bed and guide her through to the bathroom. She is able to take a few wobbly steps if fully supported. He’d lift her onto the changing table and undress her, change her pad and dress her in her school uniform whilst she tried to roll over and grab at everything.
Eliza is unable to help with dressing, often becoming unsettled and distressed. We have both had our hair pulled out, ears pulled, eyes poked, face kicked and teeth marks in our arms whilst dressing and undressing her.
Ross would then put Eliza into her adapted chair. The chair has wheels so that we can move her around the house. She has to be strapped in because she is unable to balance or sit in a normal chair.
Often, I’d be down with Nina and Felix ready half way through Ross and Eliza’s routine. I’d check in with Angus and see if he’d fed the dog.
I made the packed lunches and the breakfasts and a rushed cup of tea for me and Ross and usually found a few forms to complete in the kids’ bags, or last-minute homework to do.
Ross would feed Eliza. The process is painfully slow. If she’s in the mood for breakfast, she takes tiny mouthfuls from a spoon or our fingers. She is not able to feed herself.
Ross would walk Eliza outside to meet her taxi driver, Jim, who took her on the 20-minute journey to her school. He’d then run out to the train, the rest of us would either get on our bikes, or more often than not if time was short, jump in the car, and head to school.
This was our normal.
Then around 9 months ago, Eliza started making sudden jerky movements with her head. Her walking deteriorated and she started dropping to the floor unexpectedly, once hitting her head badly on the edge of a table, which resulted in a rushed trip to hospital with all kids in tow, a few hours at A&E, and a big scar on her forehead.
The dropping episodes became more prolonged and were followed by jerky body movements. The falls continued, and she became more wobbly on her feet than ever.
After a few short EEGs turned up nothing, I took her in for an 8-hour EEG, where she was not only hooked up to all the electrodes, but also monitored on video for the entire time she was there. By this time, she had started having up to 10 of these episodes every day, mostly lasting around a couple of minutes each.
The result of this 8-hour EEG was a referral to neurology, a very long wait to see a very nice doctor, and a diagnosis of epilepsy, something which (for some crazy reason) we thought Eliza wasn’t going to develop.
It’s a common symptom of Rett Syndrome, and usually starts after the age of 5. Eliza is now nearly eight. I suppose that we just hoped she wouldn’t have to suffer this as well as not being able to speak, walk very well, or use her hands.
Eliza started epilepsy medication. We started to worry whether it would work and what side effects she might have.. It’s a battle to get her to take this twice-daily medication, and she often refuses to open her mouth or spits it out, which is more stress for all of us.
Later this year, Eliza will be undergoing gastrostomy surgery for a feeding tube direct to the stomach, so that we can give her daily medication more easily and top-ups of food and water if necessary.
All of this has jolted us back to the reality of this devastating condition. You think you have a routine, and a way of life that you have adapted to, and at any moment this can change, and become harder and more unpredictable.
There’s a seemingly endless list of other symptoms that Eliza could develop – curvature of the spine and heart rhythm abnormalities to name just two of the most worrying.
As she gets older, we can tell Eliza is more aware of everything she cannot do. It’s soon going to become too difficult to lift her, her walking is deteriorating, and her multiple seizures are exhausting for her.
A cure cannot come quickly enough for us as we watch our beautiful daughter having to deal with all of this.
Today, Catherine is walking 25K from Richmond to Sutton, part of the London to Brighton Challenge for Team Reverse Rett Solemates. Please sponsor her here.
Catherine’s friend, Mary-Clare, has made some beautiful ‘Hope is my super-power’ t-shirts sweatshirts and pouches with £5 from every sale to benefit Reverse Rett. You can purchase these by emailing: firstname.lastname@example.org
#ReverseRett #MakingChangeHappen for people with #RettSyndrome