By Martha Hewett @MARTHA_HEWETT

A FAMILY from Watford, England, want the world to know that life can be the same when living with disabilities

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Videographer / director: Marcus Hessenberg
Producer: Martha Hewett, James Thorne
Editor: Sonia Estal

 

 

A FAMILY from Watford, England, want the world to know that life can be the same when living with disabilities.

Faye Pearson, 29, and her husband Stevie, 26, are parents to 18-month-old Rowan. Both Faye and Stevie suffer from genetic diseases which cause muscle wasting and mobility problems.

Faye was diagnosed with Spinal Muscular Atrophy (SMA) type-2 when she was around 18-months-old. The disease affects her arm and neck muscles, and her breathing.

Stevie was diagnosed with Duchenne Muscular Dystrophy (DMD) around the age of three, a condition that causes muscle degeneration, affecting his vital organs such as lungs and heart.

Both of their conditions are progressive, however, neither was passed onto their son, Rowan.

Stevie and Faye rely on the help of carers around the clock, but are determined that people recognize this does not mean they are in less control when it comes to bringing up their son and providing him with the love and care he requires.

Faye told Barcroft TV: “I want people to know that we are just a nice family of three. We are on wheels but we are no different to them.”

The couple met 11 years ago during a powerchair football match, and despite being on an opposing team, the pair hit it off.

“I saw him across the sports hall and thought, ‘He’s a bit of alright’,” Faye said.

Stevie added: “We started off as friends, and now we’ve been married for five years.”

Although they are both unable to walk and rely on powerchairs to get them around, they live independent lives – which comes as a surprise to some.

“We are not classed as normal human beings, people think we are not allowed to have children, not allowed to drive a car or own our own house – that’s how I think the public perceive us,” Faye explained.

But in fact, they – like many disabled people - are able to do all of these things.

Both Faye and Stevie wanted children, but there were a lot of risky factors they had to consider.

Faye said: “There was definitely a point where I started to worry that we couldn’t become parents.

“We tried everything possible to conceive naturally, and in the end we had help thankfully, because now we’ve got a beautiful son.”

Both Faye and Stevie were nervous about their child inheriting their conditions, but were assured this wouldn’t be the case after having the correct tests to determine this.

Rowan did however inherit the SMA gene, but he can receive the correct genetic counselling when the time comes for him to start a family,

Faye managed to carry Rowan for 35 weeks, and he was born via caesarean on October 11, 2017.

Due to her disability and Rowan being premature, Faye needed a team of 32 doctors to help with the delivery.

For Stevie, the day was full of mixed emotions.

He explained: “When Faye went down for the caesarean it was probably the worst wait of my life, but when getting the news that they were both okay, I felt on top of the world.”

The family of three live their life as normally and independently as possible, with the help of their carers.

“In relation to Rowan, everything that the carers do is instructed by myself or Stevie, and one of us is always present in any of his care.” Faye explained.

“Parenting is not difficult because we have people working for us who understand and respect us,” she added.

However, there are inevitably things both Faye and Stevie find difficult when it comes to their situation.

Stevie said: “The thing that stands out for me the most is when Rowan hurts himself and we can’t pick him up to hold him, I wish I could do that.”

For Faye, it’s the judgement of others when they are out and about as a family.

She said: “People never think we are Rowan’s parents, they just assume that whoever is with us is his parent. That’s quite upsetting and annoys me, because why can’t we be his parents?

“The world does not see us capable of being parents but at the end of the day, our little boy is very happy and very loved.”

The happiness of Rowan and the love they have for one another as a family is all that Faye believes a parent – disabled or not – can wish for.

She said: “Rowan loves me and Stevie, and that is ultimately what I wanted when I started this journey to be a parent - will my child love me like a child loves any other mother? The answer is yes.

“We love him and he returns it. He gives his love back to us and it makes everything worthwhile.”