The brave little four-year-old who went through heart surgery - and now he is coping with a rare disorder

Take a look at this smiling picture of the four-year-old from the Hartlepool area. It hides a story of a young boy’s courageous fight.

When he was just two years old, Kristin had to have open heart surgery after living with a hole in his heart ever since he was born.

He came through that only to be diagnosed with curvature of his spine just days after the operation in 2018.

Then came another health issue when he started having nose bleeds during the summer of 2019. His temperature spiked and tests showed he had a disorder which only affects one in 20,000 people.

It is called Ectodermal Dysplasia and it means the person has changes in the structure of parts of their body.

There are more than 180 different types of Ectodermal Dysplasia and it affects people in different ways. Some may have a syndrome which affects the skin, the eyes or ears, the lining of the airways, or other parts of the body.

Kristin’s condition affects his teeth and sweat glands but despite everything he has faced, Kristin ‘takes it all in his stride’, said his mum Denise, who also has an older son Kalvin, 12.

She spoke to the Mail during Ectodermal Dysplasia Awareness month.

Denise said Kristin was having his check-up at 12 weeks old when it emerged that he had a heart murmur. Echo tests were carried out and Kristin’s heart was monitored for the first two years of his life.

But then it was decided that he needed to have an operation at the Freeman Hospital in Newcastle on the hole in his heart – but the brave little boy had other health issues as well.

“He also has mild spine problems and suffered from talipes (clubbed foot) when he was born. He had to wear boots and bar on a night until the beginning of this year,” said Denise.“With his Ectodermal Dysplasia, he only has several teeth and they are pointed (triangle in shape). He also doesn’t have sweat glands so can’t regulate his temperature.”

Denise wants to raise awareness of the condition and is supporting The Ectodermal Dysplasia Society, which has its own Facebook page.

The Society is trying to raise £5,000 through a campaign called Pass The Pound so that the society can keep its support services running.

She told how her son was ‘bubbly and he is always smiling. He is always cheerful and he loves to sing. He takes it all in his stride and we are just taking each day as it comes.”

She said Ectodermal Dysplasia ‘affects his teeth. He will have to have implants when he is older and his temperature will have to be monitored in case it soars again. We will have to watch it if we go abroad and make sure his temperature doesn’t get high again.”

Kristin was one of the inspirational children who won a Child of Courage trophy at the 2019 Best of Hartlepool Awards.

Judges heard he was a lovely boy who was ‘so polite and kind’.

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