'Reggie is the most beautiful, kind, caring little soul and I am so lucky to be his mum'
Cruel stares and sometimes being snubbed by parents who don't want their children to play with him are just some of the heartbreaking side affects of Fenland boy's rare skin condition.
Now mum of two Leia Brinton wants to raise awareness of her son Reggie's condition to help make it easier for him when he starts school and to also help charity.
Three-year-old Reggie was born a collodion baby which meant he had a thick membrane, a bit like plastic wrap, all over his body. After genetic testing he was diagnosed with Lamellar ichthyosis a rare skin condition which affects less than one in 200,000.
May is Ichthyosis Awareness month and Leia, who has a nine-year-old daughter Tia, wants to raise awareness of the condition and raise money for the Ichthyosis Support Group, which has helped her family.
In lamellar ichthyosis, the skin cells are produced at a normal rate, but they do not separate normally at the skin's surfaceand are not shed as quickly as they should be. The result is the formation of scale and Reggie requires regular daily creaming.
Leia, from Emneth said: "It isn’t known whether Reggie's condition will improve with age as each individual has been different, Lamellar ichthyosis is a very rare and is not limited by gender, race or ethnicity.
"But most importantly it CANNOT be caught it’s not contagious. This makes me the most frustrated when parents look at him as though they don’t want their children near him.
"Reggie's older sister Tia is my biggest support, she copes so well with the stares and rude comments we get, but is recently starting to get very defensive when she notices it.
"Tia's school West Walton Primary are allowing us to do a cake sale on Friday (May 17) to raise awareness and funds for the Ichthyosis Support Group.
" I’m also going to contact Reggie's pre-school at Emneth to see if we can do the same there. Reggie gets on fantastic at Emneth and the staff are amazing especially his key worker Sally.
"They all chip in and do his creams and eye drops while he’s there, they make sure he takes precautions with his skin (wearing gloves for certain things they do) to help prevent infections.
"Reggie doesn’t do well in the heat as he cannot sweat so that’s always a massive challenge, he’s an absolute tornado and doesn’t sit still so he’s hard to get cool on hot days, equally the cold isn’t great because his skin dries quicker and cracks.
"Reggie's dad lives in the States but they have a great relationship via FaceTime and him coming to stay with us. I'm not sure his dad realises just how challenging it is for us or Reggie living with ichthyosis, it’s just myself and Tia who provide his sole care as we don’t have a great support network apart from other ichthyosis families via Facebook, they are my absolute rocks.
"The Ichthyosis Support Group does so much without them when Reggie was born I would have been clueless, my favourite quote is “ I understand you're not an ichthyosis parent, so raising awareness isn’t a priority, but the day before my child was born, I was not an ichthyosis parent either” - it could happen to anyone, none of us are aware of carrying the gene.
"One of the best things the group does is organise a summer camp and although Tia doesn’t have ichthyosis she was invited to go and enjoyed it so much.
"Reggie can't go until he’s eight but the fact his sister is welcome is amazing, everything they do is funded through fundraising so I just want to give back to them. At least if it does happen locally to anyone else people will be aware.
"All I ask when people see us and their children stare or want to know what’s wrong with Reggie they ask, he loves people he talks to everyone and I wouldn’t take offence. He’s starting to understand a little more and is noticing what’s going on around him, as much as it hurts me when we hear kids say eww or adults passing judgment, I’ve learned to not let my emotions show, because to me Reggie is the most beautiful, kind, caring little soul and I am so lucky to be his mum."
Leia is hoping people will help by donating cakes for Friday's event and can be contacted via Facebook.
More by this authorSarah Cliss