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SMS Foundation UK

Supporting SMS families for a positive future

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We are a small charity that supports families living with Smith-Magenis syndrome (SMS)

Never feel isolated or alone. Call our helpline and leave a message: 0300 101 0034 (we aim to respond to messages within 48 hours).

Newly Diagnosed?

Harry’s Story

July 9, 2021

When Harry outgrew his cot and moved into a bed, the family’s problems with sleep really began.

This is the story of the Donohue family as they sought to keep their four-year-old son, Harry, and the whole family safe at night by using a Safety Sleeper.

We found that when Harry awoke in the early hours, he would get out of bed and wander around his room and be quite vocal and excitable.  Occasionally we could get him back to sleep but invariably it would end up with either myself or my wife taking turns getting up with Harry at around 3 am every day, no mean feat when we both work full-time jobs. 

This went on for months, we were both exhausted to the point where doing our jobs was becoming difficult, and beyond Harry going to nursery in the week we had no respite due to the Covid restrictions. 

We were at our wit’s end but thankfully The Smith Magenis Syndrome (SMS) Foundation understands the sleep problems that families within the SMS community face. They offered advice and support, and also let us know that we could enter a prize draw for a trial of the Safety Sleeper, jointly run by The SMS Foundation and Murray’s Medical.

We were one of the winners selected on the Facebook live draw, and from the very first night, this bed changed the course of our family life.  Within 3 days of the trial we had made up our mind to buy one, and have not looked back since.  It was easy to set up, packs up into a suitcase for travel, and is solidly built but also extremely well padded inside and out, a really well thought out design. 

After bringing the travel case with the bed inside up to our son’s bedroom I set about assembling the safety sleeper, which was easy to follow and was fully assembled in less than 10 minutes.  The bed is very solidly built and will last him a good number of years, yet every part of it has been well thought out with padding and covers for zips so that from inside there is nothing that Harry could either bump his head on or scratch himself on something sharp or hard.

Once Harry had been bathed and had his favourite stories read to him, we dimmed the lights and waited until he fell asleep and then quietly zipped up the side netting and left him for the night. 

We went to bed a few hours later, fully expecting to be up at the usual 3 am. But to our surprise, we were the first to wake at 6 am and Harry was still asleep, waking up a short while later on his own!

Harry has been waking up between 5.30 am and 7 am regularly now, which has restored the energy levels of all three of us and has even meant we have had to go back to setting an alarm on workdays. 

While Harry does still wake briefly in the night, he will now play in the dark with his teddys for a short while and then go back to sleep on his own. 

We didn’t have to think twice about placing an order to buy one of the beds, and thankfully we were able to purchase one before the trial bed went back, so as to avoid any meltdowns from having the bed taken away from him.  I can safely say that they are worth every penny and cannot thank Murrays Medical and the Smith Magenis Syndrome Foundation for giving us this opportunity. 

Knowing that he isn’t wandering around his room and is safe and sound in his bed has been such a weight off our minds and being able to get a full night’s sleep has given us back our life and sanity. 

Category: Families We’ve Helped
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Never feel isolated or alone. Call our helpline: 0300 101 0034

Please note: This is an answer phone service that will alert us as soon as a message is left. A member of the team will call you back as soon as possible – we aim to respond to messages within 48 hours.

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