Meet the inspiring mother and daughter from Irthlingborough who are raising awareness of cardiomyopathy

Irthlingborough’s Sabrina Shadie and her daughter Aaliyah Aries have a lot in common. They don’t just look alike, they have shared passions. They love reading, music and going to gigs. They also love journaling, for relaxation and to manage their mental health. In addition to these creative interests, Aaliyah also has dilated and hypertrophic cardiomyopathy.

Cardiomyopathy is a general term for diseases of the heart muscle, in which the walls of the heart chambers have become stretched, thickened or stiff. This affects the heart's ability to pump blood around the body.

Most types of cardiomyopathy are inherited and are seen in children and younger people.

According to Cardiomyopathy UK at least 160,000 people in the UK, about 1 in every 250, have the condition.

Aaliyah first displayed symptoms aged 12. Her cardiomyopathy resulted from a virus that led to myocarditis.

It took some time for Aaliyah to be diagnosed, regularly being sent home from school due to vomiting, with other initial symptoms including fatigue and breathlessness.

Consultations with doctors over time led to virus diagnoses and conversations around mental health, eating disorders and body image, which mum Sabrina says they knew wasn’t the problem.

Aaliyah said: “In that whole time no-one listened to my heart and if they had, they would have diagnosed me sooner.”

After six weeks in and out of GP surgeries and walk-in clinics, and with Aaliyah experiencing excruciating abdominal pain and unable to keep down food or water for four days, a triage nurse recognised the signs of jaundice, a condition that, in this case, was experienced due to Aaliyah’s liver and other vital organs failing. She was finally admitted to hospital.

She said: “No-one expects children to have heart conditions.

“When you go [to your GP] make sure someone checks your heart, not just your blood pressure and the simple things, but actually listens if you’ve got any doubts at all. Those combinations of symptoms can be other things, but getting that checked, it doesn’t cost anything, it’s a really simple solution to a bigger problem if it’s not managed”.

On reflection, Aaliyah observed that there were a lot of signs in the build-up, but that they didn’t know.

Sabrina said: “At that point we hadn't heard about cardiomyopathy, we didn't know what was going on.”

During a running race not long before, Aaliyah’s hands and feet were tingling, and she had a very sore chest. This was then coincidentally followed by the children being taught how to take their pulse. Aaliyah’s was 130 beats per minute (bpm), exceptionally higher than the normal resting heart rate, which for anyone over 10-years-old should be between 60 and 100 bpm. These signs were overlooked, due to a lack of awareness.

Sabrina said: “Unfortunately, a lot of adults don’t take what young people are saying very seriously, or seriously enough to explore it a little bit, because it would have actually resolved or at least given us an earlier diagnosis. We can’t guarantee that would have changed the outcome in terms of how much Aaliyah’s heart would have recovered, but it definitely would have not taken her so close to the edge as we ended up.”

Aaliyah was initially diagnosed with dilated cardiomyopathy and has since developed hypertrophic cardiomyopathy, due to how her heart was affected by the virus.

Her family first heard about the charity Cardiomyopathy UK when she was in ICU, after being handed a leaflet by their consultant.

Aaliyah said: “Finding out about it [the charity] was a huge positive part of it. There’s a community to talk about what happened, and to get some emotional and peer support through the charity was amazing.”

The information helped them understand what the condition is in reality, further to what the doctors explained, and receive advice from specialist nurses as and when needed.

Sabrina said: “[Since then] the longer we’ve been involved, the more involved we seem to get.”

Aaliyah has not only participated in the BBC Countryfile’s Children in Need Ramble, raising awareness of cardiomyopathy, but she also ran her local Cardiomyopathy UK group with her mum, is part of the Cardiomyopathy UK Youth Panel, and acts as a Cardiomyopathy UK peer support volunteer, helping other young people who have been diagnosed.

Meanwhile, Sabrina is also a Cardiomyopathy UK peer support volunteer, helping parents of children who have been diagnosed and is on the outreach steering group, increasing diversity and outreach to ensure people get access to the charity for support.

She said: “It’s been really valuable to us to put something back in for the next people that come into the organisation who need that support. It’s been quite cathartic to be able to process the journey we’ve been on and see that we’re in a good place now.”

Sabrina and Aaliyah’s diligence in speaking to their GP helped them to get a diagnosis for Aaliyah.

Aaliyah said: “For someone experiencing symptoms of cardiomyopathy it’s important to get it checked.”

And even for those who don’t have a genetic link to cardiomyopathy in their family, just like her, she said: “It’s still really important to be aware of the symptoms, so that you can go to a GP and get a diagnosis as early as possible.”

If you experience symptoms of cardiomyopathy, you should speak to your GP. To find out more about Cardiomyopathy UK, head to their website, cardiomyopathy.org.