With their use of local knowledge and lived experience of Smith-Magenis syndrome, our regional representatives are here to provide support and guidance to all our families. Help with regional events that bring our community together.
Our regions are distributed across the UK in-line with the breakdown of regions that the NHS use.
I’m Claire, mum of two, Chloe (sms) who is 9 and Jamie who is 6. Chloe was diagnosed with Smith-Magenis syndrome, at birth. I worked as Data Audit officer for NHS Grampian but left to become Chloe’s full time carer when she was 2. I now work part time as a respite carer. I am keen to raise awareness and increase knowledge and understanding about SMS. I hope to connect families and support where I can.
Hazel Wotherspoon is a mum of 4 young adults, 3 of whom have significant disabilities; the 22 year old having SMS.
Hazel worked as a physio, mainly paediatrics for 27 years before leaving work to become a full time carer. She has been involved with the Foundation many years first as a member and later as a trustee. Hazel strives to increase awareness and understanding of SMS , especially amongst professionals. Her prime aim is to support families in any way they need.
North East and Yorkshire
Richard and Dawn Arnold
Dawn and Richard Arnold are parents to Cassie (28yrs SMS) and James (24). They are both retired and spend most of their time looking after Cassie. Previously Dawn worked in a school as an Educational Teaching Assistant, specifically dealing with the support of children with Special Needs. Richard previously worked in Engineering. They both enjoy Caravanning and spend a lot of their time close to the east coast at the ‘Van’ with Cassie. They live in Huddersfield and always make an effort to attend the SMS conferences to keep upto date with progress and also spend time with the SMS community.
I’m Jo Martland and along with my husband Ian we have our son Louie with SMS . He’s 14 & was diagnosed shortly before his 9th birthday.
We live just outside of Wigan, right on the Greater Manchester & Lancashire border.
Louie didn’t meet a lot of the criteria for such a diagnosis so it was a shock but once we got our heads around it I became involved in the foundation through fundraising and organising many events from cake sales, supermarket bag packing, running a few half marathons, the Co-op Community initiative, charity auction evening & much more. It was the only thing that made me feel like I was in control of this and that I could help. I’ve always been interested in research so if funding would help towards this and a possible advance in alleviating some symptoms of SMS then I’m all for it.
Louie is doing great, he’s a character like all our kids! He’s always been in mainstream school and he’s currently in year 10 studying for Entry Levels & some GCSEs. He has a small lovely group of friends and his big brown eyes make him popular with the girls! He has his moments and we know he’s a teenager but he’s maturing well and we couldn’t be more proud of him. And he sleeps and all night so it can get better!
Emma is a mother of three children, Harry, Grace (SMS) and Charlie. Emma is currently a full-time Mum and lives with her husband Mark in Birmingham. She is passionate about raising awareness and fundraising for the foundation.
East of England
Darrin and Lorraine Harwood
Lorraine and Darrin Harwood live in Norwich, Norfolk and will be happy to welcome, support and help other SMS families. Lorraine is mum to daughters Paige 27, who has SMS (diagnosed at 11 months) and Taylor 24. She is married to Darrin who has two sons Ollie 28 and Harvey 25. Lorraine & Darrin has been together since Paige was 9 yrs old. Paige now lives 15 miles from home in supported living on her own with 24-hour care and support. This has helped her to become more independent since she moved in 2012 and she copes very well with in this arrangement. She sees her family twice a week.
East of England
Anand lives in Cambridge with his wife and children. He is keen on collaborating with other regional leads on the events and activities planned by the Foundation. Anand is an engineering project manager by profession and father of a daughter with SMS (born Dec 2019, diagnosed at birth) and a son almost 5 years older than her. He has been learning a lot about SMS and is keen to connect with all SMS families, existing and new, to provide support, info, share his first-hand experiences on the go and raise awareness.
I am a working mum of 3 children, our eldest child, Ben, was diagnosed with Smith-Magenis Syndrome at 1 year, he is now a teenager and we continue to learn something new about Ben every day.
We are lucky to live on the edge of Epping Forest and all enjoy the wonderful outdoor space this is.
My aim is to help families in the region understand SMS and to make sense of the world of Special Needs that we find ourselves in.
Mick is very proactive within the foundation giving support and life experiences to families new and old.
Mick’s drive is to support families newly diagnosed with Smith-Magenis Syndrome and seeks to connect with them in his unique way.
Mick also supports dads living with Smith-Magenis Syndrome and assists in helping them to connect with each other, he is also keen to promote awareness and fundraising for children and adults with Smith-Magenis Syndrome. His son Riley was born in 2011 and diagnosed in 2014.
Jade May is from Barnstaple in Devon. She is mum to Eloise (11) who was diagnosed with Smith-Magenis syndrome when she was 2 years old.
Clare Barker is from Wrexham. She is mum to Toby (12) who was diagnosed with Smith-Magenis Syndrome at 18 months.
Natalie Hughes is from Swansea. She is mum to Callum (13) who was diagnosed with Smith-Magenis Syndrome at 5 months.
Andrea Docherty is from Newtownards, Co Down. She is mum to Lauren (26) who was diagnosed with Smith-Magenis Syndrome when she was 22 years old.