We spoke to Rebecca about how her positive result changed her outlook on life and led to her completing a degree and a masters, fostering 14 children and setting up a support group for people affected by Huntington's disease in her area.

Tell us a little about you and your background

"My name is Rebecca and I live with my husband and our two children Sophie aged seven and Poppy aged four. We also have two teenage foster boys with us. We have fostered 14 children so far and have been fostering since 2020. I have the most amazing and supportive husband, he never stopped me from fostering or going back into education.

 

In my spare time I am a district commissioner for Craven South Girl Guiding and I manage all the guides, brownies and rainbows in my district. I also run the ranger unit for girls aged 14+. I co-chair my girls’ school Parent Teacher Association and we raise money to put on events and give back to the school. I was recently diagnosed with M.E/CFS so this has been a major adjustment for me as I'm not as quick at getting things done as I used to be."

When did you first find out about Huntington’s disease?

"Although my eldest uncle had a different father from the rest of his siblings, we always knew there was a possibility of Huntington’s after he started to develop symptoms. My mum and her siblings were brought up in care and had limited information about their parents. It was always assumed that my uncle got the gene from his biological father and not the mother they all shared - this was until others started showing symptoms.

 

My aunt tested positive in 2013 and then My mum tested positive in 2014. After that everyone in the family seemed to be getting positive results.

 

My mum is the youngest of nine, (two of which can not be contacted as they were adopted out). Two of her siblings have died from Huntington’s disease and three of them are currently symptomatic. One came back negative and one decided not to be tested (now in his 60s)."

What made you decide to get tested?

"I decided to get tested so that I could plan for our family's future. I expressed my interest in being tested but it took 18 months for them to contact me with an appointment so I was actually pregnant with my second when I started the testing process. The clinic was amazing, they were very understanding and were always asking if I wanted to wait until after the birth to test. I took my newborn to the third appointment, the staff were loving baby cuddles before I had my blood taken.

 

I found out the results the day before my birthday. I think I knew I had it. I wasn’t surprised. I wasn’t upset. The consultant was a bit taken aback I think due to my reaction. She called several times after to see if I was ok. 

 

I didn’t tell any family members that I was being tested. I didn’t tell them because I didn’t want to be convinced to not get tested. I only told my stepdad the week before so he would help with child care as we never normally asked my mum and stepdad to babysit and I didn’t want mum to think something was happening. He was amazingly supportive and checked in with me every day in the lead-up to the appointment.

 

I didn’t tell mum because I didn’t want her to worry. When she worried she would have more falls so I kept it from her until the day we were going for the results. She was really upset and blamed herself for my result. When I told her she just hugged me and wouldn’t stop apologising. 

 

As soon as I left the hospital after my result I rang my dad to tell him. He has always been my level head. So I expected him to be ok. He was actually mad. All he said was “did you even think about your sister when you decided to do this?” my reply was “never mind my sister, what about me? I’m the one with the gene. I’m fine by the way” and I hung up. My husband then took me out as I was more upset about my dad’s reaction than the result. 

 

My husband's family also didn’t understand why I got tested for something that couldn’t be fixed. I had to tell them I need a pension that I can access early, I need to financially plan for my illness and there was the opportunity of research studies that I could join to help find some sort of cure in the future for my children. They understood after that."

How did your mindset change after receiving your result?

"The day after my result was my 28 birthday. We spent the weekend visiting family and had a party at my in-laws but I was thinking about the future. I was looking at my girls and started to think about how they would look at me and how they would tell their kids about me. I wasn’t sad about it. It lit a fire in me. Sat at my birthday party, phone in hand, I sent the application to start my bachelor’s degree. I wanted my girls to know that an education at any age was important. I wanted them to see me in my cap and gown and I wanted my mum to see me graduate after she supported me when I had to leave school at 14.

 

I passed with a 2:1 upper-second class honours and I was so proud of myself. I decided to do a masters of research and completed that too. I now had letters after my name! I was flooded with job offers but the idea of accepting them didn’t feel right. I wanted to help people instead."  

Please could you tell us a little more about fostering?

"Before we had our girls my husband and I were told we probably wouldn’t be able to have children. We went through the adoption process and were approved adopters. We were two weeks off meeting a little boy when we found out I was pregnant. 

 

After finishing university I was given many job offers. I told my husband that I didn’t want a job in what I was now trained to do. He actually said, “you want to foster don’t you?”. Turns out he had been thinking about it since the result but didn’t want to mention it when I was still in education. Within a month we had signed up and started the fostering process.

 

The process was a little more in-depth because of Huntington’s disease. The company wanted to speak to medical professionals before we went to the panel. But despite their worries, the medical professionals said that we would be fine. 13 days later we had our first placement and we haven’t stopped since. 

 

We absolutely love fostering and I know we are quite literally changing lives. My girls have been described as so loving and caring by teachers and parents at school and I put it down to us fostering. The two boys we have now are very settled and I have a feeling they are going to be here until they are 30."

Please could you tell us a little more about your support group?

"Myself and my younger cousin Charlie, who lost her mum to Huntington’s, decided that there had to be something we could do to help within the Huntington’s community. The nearest groups to us were Leeds and York both, which were really too far to travel so we just decided to go for it. We are excited to start something new but nervous that no one will come. We joke that it will end up being a family meeting. 

 

You can visit their support group page here. Rebecca and Charlie will be hosting their first meeting on Tuesday 07 February at Keighley Salvation Arm. The venue also contains a food bank and they have kindly offered to assist with benefits."

Have you had contact with anyone from the Huntington’s Disease Association for support?

"Many of my family members have had support from the Association and I have always known it is there for me if and when I need it. Until then I want to help them reach out to others so that when it's my turn someone will be there to help me too. My niece had me teach her to crochet and raised money for the Huntington’s Disease Association's celebration of 50 years. She crocheted 50 blue awareness ribbons and raised over £150."

Thank you so much to Rebecca for sharing her story with us.

If you are affected by Huntington’s disease and are in need of support or advice, please contact us on 0151 331 5444 or email info@hda.org.uk. 

If you have a story to share, please get in touch with us via email.