An Arlecdon woman is speaking out about her brave daughter’s brain tumour to raise awareness of a condition that is so rare the family were told that Hannah had a one in 1.2million chance of having one.

Karen Horn, lives in Arlecdon with husband Ian and daughter Hannah Horn, 25. Hannah’s sister Harriet-Alice Horn, who Hannah communicates with daily, is 29 and lives in Cardiff.

Hannah has a craniopharyngioma – a rare form of pituitary tumour in her brain that she has battled with all her life.

The pituitary gland in the brain controls many vital functions in the body and tumours affecting the pituitary gland will cause physical affects including: headaches, nausea, vomiting, hormone disturbances, visual disturbance, behavioural changes, growth and weight changes.

Ian was a Colonel in the army and the family moved with his job to Canada when Hannah was two.

She developed a viral pneumonia and was very sick in Calgary. On her return to England aged five she suffered from myxedema – an extreme hypothyroid condition. This took two years from five to seven to get diagnosed: “We knew something was wrong, you know as a parent. We were told that another couple of weeks would have seen her comatosed”, Karen said.

Looking back now Karen said the illnesses in Hannah’s early years were due to the tumour in her brain: “She struggled with her immune system and we didn’t realise what was going on in the background, Craniopharyngioma is a rare type of brain tumour derived from pituitary gland’s embryonic tissue that occurs most commonly in children, but also affects adults”, Karen said.

With treatment for the thyroid condition Hannah was a different child and the family thought that she had recovered.

At seven almost eight-years-old Hannah joined her sister at boarding school. From the age of 12 she began suffering from severe headaches and vomiting every day. Her mother said the school was sceptical and wondered if she was attention seeking. Friends also accused Hannah of putting on her symptoms.

An appointment was made to see an optician, who made an emergency referral for a computed tomography scan (CT). The first hospital missed the brain tumour. A second hospital carried out a magnetic resonance imaging scan (MRI) which detected that something was wrong.

Although benign in nature, the pituitary tumour is malignant in its behaviour, and Hannah was experiencing symptoms including eye weakness, headaches, loss of consciousness and problems with her endocrine system.

She was diagnosed with a craniopharyngioma in 2007 at the age of 14. At the same time she was also diagnosed with hypopituitarism and hypothyroidism as a result of craniopharyngioma, both debilitating conditions in Hannah’s case.

An operation to drain the tumours and insert an ommaya reservoir were carried out in 2007, but it didn’t remove all of the tumour as some had calcified. Prior to radiotherapy Hannah had another operation to revise the reservoir as the catheter had come loose and was pressing into the front temporal lobe causing seizures.

Radiotherapy was administered in 2008, followed by major surgery in 2010 to remove the reservoir and more tumour. However in 2015 the tumour had regrown and Hannah had the biggest operation to date at Newcastle, where Karen said her daughter was cut almost from ear to ear to have a fourth tumour removed.

“It was crushing her optic nerve and we were told it would render her blind so, she had pioneering surgery by the surgeon but, still lost up to 40 per cent of her sight. Although she has lost some of her sight it was a relief as she didn’t lose all her sight,” Karen said.

Against all the odds Hannah took exams at school, studied for A levels and took a place at Reading University, where she was studying archaeology and classics. Unfortunately Hannah has had to take a sabbatical from University. Her mother said: “Although she looks good, they don’t see what we see. Some days she is confined to bed and does crafts to keep busy. She is not able to work, Ian and I are her full-time carers.”

This has been a lifelong battle for Hannah, who is a classically trained singer at Grade 8 level, even singing for the Pope at the Vatican in 2009, when she was 16.

Karen said Hannah’s lifelimiting and lifethreatening condition has had a massive impact on their lives. After 37 years in the army her husband retired early and the family moved from Hampshire to Cumbria in 2014, as Hannah’s health was deteriorating.

Karen describes living in Arlecdon as a double edged sword: “It is fantastic living here with the mountains, friends etc, but there are not a lot of young people for Hannah and it’s a 200-mile-round-trip to the Freeman and RVI in Newcastle.”

There is no prognosis for Hannah. She is monitored regularly with treatment at Freeman hospital. The condition causes Hannah to collapse two to three times most days. She suffers from chronic fatigue syndrome and she has been on strong painkillers and morphine.

Hannah is willing to try new treatments for pain relief and is trying botox pain treatment, where she will get more than 30 injections into her head and neck and if the treatment improves the pain she will get more injections in 12 weeks.

The family are also optimistic about a new drug being used in America to treat migraines, which works on the neurotransmitters in the brain. It is not yet licensed in this country.

Karen said: “It was a shock at the beginning, but it’s Hannah’s normal life. You normalise it like that. I think some people are shocked when they hear Hannah has a brain tumour, I suppose we sound a bit blaise almost, but that’s our normal. There are life limiting conditions and we just have to get on with it, we still do things, go on holiday, it’s difficult on a plane as the pressure on her head is painful, but she enjoys it when she gets there. She has bad days and better days.”

Karen has found support in the Lamplugh Women’s Institute, getting involved when she first moved to Cumbria in 2014 and is now the Treasurer of the group.

Members wanted to fund raise for the Brain Tumour charity because they know Hannah and wanted to raise awareness of her condition.

Andrea Pankiw, from the charity, travelled from Liverpool on a six hour-round-trip to collect a cheque for what she thought was £204.00 but she thought the amount must be a mistake, as there are only 27 members in the branch.

The Lamplugh WI had actually raised £2042.00.

Fundraising was done in 2017 by a variety of ways: a hat lunch; craft fairs; quiz night; bingo; four quiz sheets – compiled by Karen and a calendar.

Hannah will sing for the Lamplugh WI next week at the institute’s 90th birthday celebrations.