Krystie’s legacy

Spending night after night in front of a computer researching her daughter’s rare degenerative disease inspired Molvia Maddox to help others living with health challenges.

She launched online support platform Melting IceCubes Health to enable people to build knowledge and understanding of their conditions.

It brings essential information from trusted sources, practical resources such as details of support services, and social networking features together in one place.

Molvia was supported in setting up Melting IceCubes Health by her daughter, Krystie Maddox-Lue, who was diagnosed with Friedreich’s ataxia at the age of nine.

Krystie’s first symptoms had appeared a few years earlier but doctors had been unable to find a cause despite Molvia insisting something was wrong.

The condition causes difficulty walking which worsens over time and a loss of sensation in the limbs. It can also cause blindness, deafness and heart complications.

When Krystie’s walking started to worsen, genetic tests were carried out which confirmed the hereditary condition.

The diagnosis came as a devastating blow for the whole family but Molvia, who lives in Wolverhampton, says Krystie took it all in her stride.

After excelling in her GCSEs and A-levels, she studied film and television production at Edge Hill University in Ormskirk in Lancashire and graduated with a first-class degree.

Once back in Wolverhampton, Krystie, who played wheelchair basketball, lived in a specially adapted bungalow next door to her family with the help of carers. She was able to indulge in her hobbies of writing and art and kept herself busy working as a panel script writer for Counter Intelligence Films.

Krystie, who used a wheelchair, also found time to write a blog and do voluntary work with her Jehovah’s Witness congregation.

She always refused to let her genetic illness stop her from chasing her dreams even when her health began to deteriorate due to her weakened heart.

After being admitted to Compton Care, the former Claregate Primary School and Thomas Telford pupil passed away on April 11, 2019, aged 29.

Despite her grief, Molvia was determined to continue moving forward with Melting IceCubes Health, which had launched just two months before Krystie’s death and has grown from strength to strength.

The number of people visiting the platform continues to increase daily and now there are more than 29,000 users from 21 countries.

It holds information relating to more than 600 conditions and ranging from impairments to chronic illness.

“We also help people to connect with each other, share stories and we signpost products and services. Self-funded to date, we have overcome many obstacles to achieve this, not least carrying on despite losing Krystie.

“I am proud that I have still carried on with the plans for Melting IceCubes Health – she helped me shape it, it’s her legacy to this world,” says Molvia.

The platform has been designed to be as simple to use as possible and give people a 360-degree view of their condition, including the latest news and research and relevant medical information.

“Negotiating medical appointments and managing the impact of a health condition or impairment on everyday life can be bewildering, frustrating and stressful for anyone with a health challenge, as well as the people closest to them.

“We believe that knowledge is power, and we hope that Melting IceCubes Health not only helps to reduce feelings of isolation but also offers practical help to users when they need it most,” says Molvia, a freelance IT project manager.

The platform has been inspired not just by her own experiences but also Krystie’s and she spent several years thinking about the concept before taking it to development.

“I used to spent lots of time on Google because as Krystie’s illness progressed, it affected different parts of her body so every time she developed a new condition, I needed to do my homework.

“I would spent hours after the kids were in bed putting different searches into Google and finding new ways of asking the question to try to find nuggets of information.

“When I did find anything I would know for sure how up to date it was or if it was still relevant.

“With our platform, it’s just one click and all of the information is there. It’s information you can trust and our algorithms ensure it’s all up to date,” explains Molvia.

Another feature on the site is advice on different aspects of every day such as travel, education and work where users can share their experiences. “Krystie wanted people to see that they could still get on with living their life despite their illness,” says Molvia.As well as helping people dealing with a health challenge as well as their family and friends, the website has also proven valuable to medical students.

“It allows medical students to develop understanding and empathy on patients’ conditions during their training,” explains Molvia.

Melting IceCubes Health has earned praise from those working in medical fields and Molvia has also been recognised for her efforts. She recently featured as part of a Black History Month campaign by The Knowledge Transfer Network London (KTN) celebrating innovators and entrepreneurs who are trying to drive positive change in the world.

“I couldn’t believe I had been included, it was amazing. My grandaughter, Isobelle, went into school and told her classmates how her Mimi, her pet name for grandmother, was in a London entrepreneurs Black History month campaign. “It’s important that children of colour from our region see people like themselves achieving,” says Molvia.

She is passionate about making a positive difference to people’s lives as a fitting tribute to her “very courageous and determined” daughter.

“In Krystie’s last few days of life we were talking about Melting IceCubes and I told her ‘Krystie you will never be forgotten. Melting IceCubes only exists because of you. Everything you have been through will never have been vain, it’s going to help and making a difference to so many people’,” she tells Weekend.

See meltingicecubes.com

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