Mum from Hove talks about raising son with dwarfism

Rosie Drage lives in Hove with her partner Lloyd, four-year-old daughter Alba and 16-month-old Arlo. Arlo has a genetic disorder called Achondroplasia, which is a form of dwarfism.

It is a condition shared by Paralympic swimmer Ellie Simmonds, who Rosie has been in touch with. The couple will be meeting Ellie next January as part of an upcoming documentary.

Rosie said: “We’re really excited to meet her. We haven’t had a conversation with an adult with the condition yet. She’s an amazing person.”

Ellie has produced two documentaries already, the first of which centred on her bid to discover her birth mother, who gave her up for adoption, just a few days after her birth.

Rosie watched this documentary during her pregnancy with Arlo, an experience which was “quite intense”.

Paralympic swimmer Ellie Simmonds also has achondroplasia (Image: PA) Rosie discovered Arlo had Achondroplasia at 28 weeks.

She said: “At that time, you think you’re sailing. I was totally floored. I hadn’t had the easiest pregnancies with either of my children. It was a really rough time.”

On top of this, Rosie was made redundant from her role as head of patient experience at NHS Sussex, having worked for the NHS as a mental health nurse for 14 years.

She said: “It was an incredibly challenging and traumatic time.”

Although Rosie admits there are “good and bad days”, the family are in a “much better place” and on a “learning journey” with the condition.

Rosie and Lloyd with their two children, Alba and Arlo (Image: Submitted)

Achondroplasia is caused by a genetic mutation. Those with the condition typically have an average sized body, but short arms, legs and fingers.

Characteristics include a larger head and a more prominent forehead, a sunken bridge of the nose, very flexible joints and changes in the back.

Many people with achondroplasia do not have serious health problems and lead a relatively normal life. There are, however, some health complications which come with the condition.

Rosie said: “All their milestones are delayed so Arlo is nowhere near sitting up or standing yet. His mind is further on than his body.

“Due to having smaller rib cages and lungs, bronchitis can make them really poorly and due to the flattened nose bridge, this makes breathing with a cold really difficult and causes sleep apnoea.

“He may get bowed legs and may need surgery for decompression around the spinal cord. He has a curved spine so we can’t use slings, carriers or curved seats. We need to use a straight-backed chair.

“It has become our way of life, we had to learn a lot.”

Children with achondroplasia are born with a curve in the lower part of their spine. This can worsen if positioning and handling guidance is not followed when they are a baby (Image: Submitted) The couple have developed a network with other parents whose children have achondroplasia, and Rosie says that talking to other mums has been “priceless”.

She has now launched her own business, Post Natal Minds, inspired by her experience with Arlo. The business offers online coaching and sessions to men and women in the postnatal period, with a focus on mental health and wellbeing.

She is also running the Brighton Half Marathon on March 2 for Little People UK, a charity founded by actor Warwick Davis, his wife Samantha and others.

Rosie said: “I’m a bit intimidated because I’m not made for running and I’m two kids and two c-sections down.

“I wanted to push myself out of my comfort zone because I’ve been pushed out of my comfort zone massively with everything with Arlo.”

The charity raises awareness of dwarfism and offers support to those with the condition. So far, Rosie has raised more than £700.

Arlo with big sister Alba (Image: Submitted) Rosie said: “We live in such an aesthetic based world, I do worry about bullying. We’re approaching the conversation about difference with our children and about not seeing difference as weird or scary.

“It has been a wakeup call about disability, something which our eyes were more shut to before Arlo.

“I also worry about the practical things. But then I think, you have to stay in the present because if you worry now, you’ll worry twice.

"As long as he’s surrounded by love and support he'll be ok. If he's anything like his sister in terms of determination and might he'll be fine."