Thank you to everyone who took part in our Sunset, Moonlight and Sunrise – Teddy Bears’ Picnic.
Competition Winners Announced
Genny Bear has been found, and we now know what she looks like!
Find out which bear design our judges picked to be the SMS ‘Genny Bear’ and official mascot for the SMS Foundation…
Make a Difference
Living with SMS can present a variety of challenges for families. During infancy quite often there are feeding problems, failure to thrive, weak muscle tone, prolonged napping and lethargy.
Then later in childhood and adulthood, there can be the development of disturbed sleep patterns (regular waking throughout the night and sleepiness in the day), as well as behavioural problems including: frequent temper tantrums, impulsivity, anxiety, distractibility, aggression and self-injurious behaviours including self-hitting, self-biting, and skin picking.
When Katherine Barnwell, 39, gave birth to her second daughter, Mia, it was clear almost from the outset that there were problems.
‘From the age of five weeks, she was in the hospital for two months with bronchiolitis – inflammation of the lungs’ small airways – and reflux,’ says Katherine, an intensive care nurse from West Bridgford in Nottinghamshire. ‘She kept going grey and floppy and her heart rate would drop – it was as though she was trying to die all the time. We’d have to rub her or get help to keep her going.’ Katherine and her husband, Giles, took it in turns to stay by their baby’s bedside, a harrowing time for the couple, who also had to juggle the care of their two-year-old daughter, Lily, now nine.
Here are some of the ways the SMS Foundation support families:
- Provide information – we have a variety of literature available on the website or by request
- We provide small grants (up to £500) to improve the quality of life of the person with SMS, and financial support (up to £200) for social events (get-togethers) for members to connect with other SMS families and share experiences
- Sponsorship of research into the key symptoms of Smith-Magenis syndrome
- Direct any questions you have to relevant professionals. We are not medical professionals, so any questions related to sleep, medication, behaviour etc we will forward on to our board of professionals who do know
- Provide emotional support on the phone or in-person
- Provide information for interested parties ( e.g housing/education etc) about Smith-Magenis Syndrome
- Organise biennial conferences which allow our Smith-Magenis syndrome community to share information, experiences, ideas and knowledge
- We promote awareness of SMS through our partnerships with other charities and organisations including Cerebra, Genetic Disorders and Jeans for Genes
- Fundraising events – As this not only raises much-needed funds for the foundation it also creates an awareness of Smith-Magenis Syndrome.
Stay at Home – Activity Pack
Keep busy, stay at home and stay safe during the coronavirus lockdown with our children and ‘SMS-friendly’ pirate themed activity pack.