A team of volunteers from Simon’s Heroes children’s charity have transformed the bedrooms of the home of a little boy with a rare swallowing condition, to help him and his family enjoy a decent night’s sleep.
Teddi Slim (2) has an ‘unsafe swallow’ for liquids only. This means that when he drinks, the fluid goes down the wrong way and into his lungs instead of his stomach.
When Teddi was 3 months old he became very poorly just 24 hours after a GP had diagnosed him with a common cold. Mum Terri took him to the Robert Peel Hospital’s Minor Injury Unit for further assessment. One of the nurses recognised the signs of pneumonia and he was hurried straight into resuscitation. He had acute respiratory failure, a collapsed right lung, hyper inflation of the left and was in pre-arrest. After an hour of life-saving work, Teddi was transported by air ambulance to Birmingham Children’s Hospital where he received round the clock care and eventually made a full recovery.
At age 1, Teddi’s health declined again. He went into respiratory failure and arrest and was on life support for 7 days whilst medical staff drained milk off his lungs. It was at this time he was diagnosed with an unsafe swallow. Since then Teddi has had to use a feeding tube which is inserted through his nose and down into his stomach every time he has a drink. He wears this for at least 3 hours a day. Teddi also suffers from extreme anxiety and speech delay.
Teddi lives in a 4 bedroom house with his mum, brothers Blake (3) and Lucian (7) and sister Maia (5). All of his siblings have various conditions, which are not life threatening but do cause disruption and make for a stressful environment for the family.
Maia has Lingual Thyroid, a developmental anomaly, where the thyroid at the back of her throat is enlarged. This can cause airway obstruction as well as coughing and sleep apnoea. Maia used to share a bedroom with her brother Blake but struggled to settle as he would often disturb her during the night. The room also lacked sufficient storage and was very cramped. She instead preferred to sleep with her mum, however Maia’s coughing would keep mum awake and exhausted. Teddi slept in a travel cot in his own room which was in need of redecorating. The dark colour scheme did little to help soothe him when he became upset. Lucian’s room was used to store the surplus toys that the other bedrooms couldn’t accommodate. Whilst mum Terri realised she needed to do something to improve their sleeping environment, she had little time or support to make it happen and approached Simon’s Heroes to see if they could help.
The makeover took place over a weekend whilst Terri and her family enjoyed a two day break at Legoland which Simon’s Heroes helped fund. They built furniture and assembled storage units, hung blinds, painted, added wall transfers and mounted toys. Teddi’s room was painted in bright colours with a matching blind and accessories. His travel cot was also upgraded to a more sizeable baby cot to aid a more restful sleep. Maia and Blake’s room was split into two areas using a standalone shelving unit and safety gate, giving both children the personal and storage space they need. This has freed up space in Lucian’s room which is much less cluttered and mum now enjoys a decent night’s sleep as Maia is happy to rest in her own bed.
Mum Terri said: ‘I really am so grateful for the help we have received from Simon’s Heroes. Teddi is sleeping so much better! He seems brighter and happier in his new room! Everyone seems more settled as we now have more personal space. I feel so much more refreshed too!’
C Bull
