Couple who were BOTH diagnosed with Huntington’s disease marry in hospice care

A couple who met in hospice care after both being diagnosed with Huntington’s disease have wed in an intimate ceremony at the facility – as the bride’s family revealed how her new husband helped her to overcome the ‘horrors’ of her condition, which saw her try to kill herself three times. 

Matt Weeks, 49, and Sara Smouther, 38, from Cloverdale, Indiana, fulfilled their dream of tying the knot in front of their closest family during a small ceremony held at Summerfield Health Care Center on Saturday.

The couple both feared that they’d never find love after they were diagnosed with the rare inherited disease – which causes the breakdown of nerve cells in the brain and has left both of them in wheelchairs.

Huntington’s disease can affect a person’s functional abilities, and usually results in movement, thinking, and psychiatric disorders. Most patients survive for 10-25 years after the onset of the illness, Medscape reports. 

Sara said she first began to worry that she had the disease when started to notice herself twitching and falling a lot. She also developed depression, anxiety, and obsessive compulsive behavior.

Her dad, Stephen, had died from Huntington’s at age 48. Her grandmother also passed away from it, and her great-grandmother drowned herself in a family pond after she was diagnosed.

Love prevails: A couple, who were both diagnosed with Huntington’s disease, has tied the knot while in hospice care

Here comes the bride: Matt Weeks, 49, and Sara Smouther, 38, from Cloverdale, fulfilled their dream of tying the knot when they wed at Summerfield Health Care Center on Saturday

The couple both feared that they’d never find love after they were diagnosed with the disease – which causes nerve cells in the brain to breakdown and has left both of them in wheelchairs

Matt (pictured as a kid) – who was a sound engineer and previously worked with famous faces like Billy Ray Cyrus and Martina McBride – was diagnosed when he was 34

Sara recalled feeling ‘pretty scared’ when she found out she had the disease at age 30, while her mom added that it was ‘a relief’ to finally know what was wrong.

‘It was devastating,’ her mother, Terri Catino, said. ‘At the same time, Sara would say it was a relief. “OK I know. I know I do have it. Now, I’ve really got to figure out my future.”‘

Before meeting the love of her life at the hospice center, Sara – who has two master’s degrees in education and literacy and previously worked as a sales rep at Zaner-Bloser, an education publishing company – struggled to come to terms with her illness, and tried to take her life multiple times.

Her mom recalled, ‘That was the worst time of her life. For all of us.’ 

According to NCBI, ‘completed suicide rates in Huntington’s disease patients were 5.7 per cent while 27.6 per cent of individuals with Huntington’s acknowledged at least one suicide attempt,’ making it the neurodegenerative disease with the highest attempted suicide rates.

She was married once before, but the relationship ended in divorce, in part, because she didn’t want to have kids – since she was most likely not going to live long enough to see them grow up.

‘I think secretly, she didn’t want to have a child, knowing she was going to die and not be there for that child,’ Terri added.

As for Matt – who was a sound engineer and previously worked with famous faces like Billy Ray Cyrus, Martina McBride, The Judds, and Michael W. Smith – he was diagnosed when he was 34; his mom, Barbara, also had the disease. 

Sara (pictured as a teen, before her diagnosis) said she first began to worry that she had the disease when started to notice herself twitching and falling a lot

Years before his diagnosis, Matt’s family said they knew something was ‘out of whack,’ after he started to struggle with paying bills and keeping his life organized. He is pictured as a kid

Matt decided to quit his job in the music industry to work at Starbucks, and went to live with his dad. He is pictured before the diagnosis

Years before his diagnosis, Matt’s family said they knew something was ‘out of whack,’ after he started to struggle with paying bills and keeping his life organized.

Before meeting the love of her life at the hospice center, Sara struggled to come to terms with her illness, and tried to take her life multiple times. She is pictured before her diagnosis

He decided to quit his job in the music industry to work at Starbucks, and went to live with his dad.

‘We knew something was out of whack,’ said Mark Weeks, Matt’s brother, to Indy Star recently. ‘He went to live with our father. He was having trouble just paying the bills and keeping his life organized.

‘He had always been funny, quick witted. But also, I would say a thinker in the sense that he could surprise you sometimes with his thoughts on life, politics, philosophical issues.’ 

Matt’s previous romance ended for similar reasons, with Tasheena Duncan, the administrator at Summerfield, revealing that he voiced his fears to her that he may never find someone to spend the rest of his life with.

‘And then he met Sara and she felt the same way,’ Duncan said. ‘And Matt knew it was going to be OK.’

According to Sara, she was the one who introduced herself to Matt soon after she moved into Summerfield.

‘I introduced myself actually. I thought he was really cool and he made me happy,’ she gushed.

Last year, the couple approached Duncan and said they wanted to get married. Matt then went to Walmart where he picked out a ring. 

True love: Sara’s mom said, ‘When they’re together, they are always holding hands. They bring each other such comfort. It makes me so happy’

‘Matt had withdrawn from life and had become rather secluded,’ Matt’s brother added. ‘To marry Sara is the best thing for him. She’s wonderful, outgoing, feisty, and charming’

He proposed to Sara at Summerfield’s prom last fall, and he called her mom to ask for permission first. 

With the help of staff members, he got out of his wheelchair and down on one knee. Sara, who recalled shaking with excitement, told him, ‘I love you. Yes. Thank you, thank you.’

‘I was beyond happy. It made me cry,’ she remembered.

Duncan added of the touching moment, ‘He cried. We all cried.’

When asked what she loved about Matt, Sara told Indy Star, ‘Everything, everything. He makes me so happy.’

The two wed in front of 40 friends, family members, nurses, doctors, and staff members at the hospice center over the weekend.

With help, Sara was able to walk down the aisle. She donned a stunning, white wedding gown, while Matt wore a purple and black suit for the affair.

At the altar, the two sat in their wheelchairs and held hands, while Matt’s brother officiated the wedding.

‘This is truly a miraculous day, a truly wonderful moment for all of us,’ he said. ‘To see the triumph of love here played out before us.’  

Mark called it his ‘fondest wish come true’ to see his brother get married.

‘It was what I had really, really hoped for,’ he told Indy Star. ‘Matt had withdrawn from much of life and had become rather secluded.

‘He had lost touch with most of his friends. I think he had given up hope. To marry Sara is the best thing for him. She’s wonderful, outgoing, feisty. She is just charming.’

Touching: Matt proposed to Sara at Summerfield’s prom last fall – a moment that left everyone in the room in tears. They are pictured during the proposal

The two wed in front of 40 friends, family members, nurses, doctors, and staff members at the hospice center over the weekend. With help, Sara was able to walk down the aisle

At the alter, the two sat in their wheelchairs and held hands, while Matt’s brother officiated the wedding. He called it his ‘fondest wish come true’ to see his brother get married

You may now kiss the bride: ‘This story, it’s a reminder that despite having a horrendous disease, despite having horrendous luck in life love can come through,’ said their doctor

Sara’s mom added, ‘When they’re together, they are always holding hands or, when they’re out watching TV, Sara lays her head on his shoulder. They bring each other such comfort. It makes me so happy.’

‘This story, it’s a reminder that despite having a horrendous disease, despite having horrendous luck in life love can come through,’ said Dr. Christopher James, Sara and Matt’s neurologist at IU Health.

Duncan added, ‘This day is a celebration of love. And when Matt and Sara and I talked, we defined love as being able to overcome the past, the present and being able to love each other without condition.’

‘Their love is an inspiration to not only the staff but the residents and everybody that meets them.

‘It was so important for Matt to marry Sara because he knows when they get to heaven, they won’t have Huntington’s anymore. And they can spend eternity together.’

Terri concluded that Sara and Matt’s romance is a ‘happy story for such a sad disease.’

‘They just want to feel normal. They just want to be normal,’ she said. ‘Sara just wants people to know she is living her best life, her and Matt, and you can do that.

‘It’s such a happy story for such a sad disease. Sara always had a beautiful smile, always willing to help anybody with anything.

‘She has always been a very upbeat, positive person and she still is to this day, even after being diagnosed with Huntington’s.’