May 2014 after years of poor health my daughter Charlotte had tonsils and adenoids removed. They were the largest the consultant had ever seen.

August 2015 my wife found two lumps in the front of her throat around her thyroid.

March 2016 her thyroid was removed and we were later told that she had a 2.5 cm malignant tumour on one thyroid and a 2cm benign tumour on the other.

May 2016 she had radioactive iodine treatment.

November 2016 we had the devastating news that she had Cowden syndrome and would be at a huge risk of cancer for the rest of her life.

April 2017 we were told she had chronic fatigue syndrome most likely as a result of all she had been through.

November 2017 Postural Orthstatic Tachycardia Syndrome was added to her diagnoses.

January 2019 we realised the trauma of the past few years had created quite severe OCD in Charlotte.

She is now 16 and disabled by chronic fatigue syndrome, postural orthostatic tachycardia syndrome unable to attend school or see her friends all of this stems from Cowden Syndrome. She has however managed to gain 6 GCSEs and is now studying towards A levels.

She has regular checks and hospital appointments to look for any signs of cancer, but in all honesty we as a family still live on fear. Is a headache a brain tumour? Is an ache in her bones the cancer returned and spread? Of course we try our best to not go down the rabbit the hole. But this is living as a childhood cancer survivor, this is living with Cowden Syndrome.

Rare diseases are massively underfunded and misunderstood. The impact on those who have it or their families is no lessened because they are a smaller in number, in fact in many ways it;s worse. There are no celebrity figure heads, no local support groups, even trying to talk about it involves a lengthy explanation as to what it even is which increases isolation. Charities like the PTEN foundation help bring a little hope.

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