IMAGINE as a mother not being able to feed your child.
“My daughter, Hannah has, a very rare condition, suffering severe jaw pain, unable to move from her bed or talk much or eat properly,” says Hannah’s mother, Ann Hill, who is an author from Carrigaline and who lives in Galway.
“As a mother, all you want to do is feed your kids isn’t it?” says Ann, who is mum to 19-year-old Hannah and Asha, aged 16. Asha is a talented artist like her dad, David.
The proceeds of Ann’s new book, The Secret Book of Parent Training, How to bring out the best in Mums and Dads, is going towards Hannah’s surgery.
“Hannah’s condition is so rare, the doctors don’t know what to do and we have very little medical help because of that,” says Ann.
“Hannah is lying on the couch at home every day in pain, unable to move.
“She needs 3D titanium joints made for her face.”
Hannah, like her mother who is a trained journalist and a published author, had ambitions of making headlines of her own some day.
“Hannah wanted to get into film-making,” says Ann.
“Her ambition was to be a film script writer. Now her whole life is on hold. She’s missed out on the best years of her youth.”
Can the young woman harbouring dreams of seeing her name in lights get her life back?
“The only hope was to bring Hannah to an oral maxillofacial surgeon in London, who is a world leader in joint treatments,” says Ann.
“He put forward a plan of surgery and stem-cell treatments with the hope of saving her jaws so she can live a normal life.”
Everybody in Cork and Galway and beyond rowed in behind Hannah in a bid to help her get her life back.
“There was a huge fundraising effort which was wonderful,” says Ann.
“Sufficient funds were eventually raised by October, 2019.”
Hopes were raised.
“However, three months after this operation it was discovered that it had not been successful and that Hannah has a genetic problem,” says Ann.
Is there any more hope?
“The only option now is to have a double jaw replacement. This is a huge surgery with a long recovery time and it is a very tough experience for anyone to face.”
It is scary.
“Yes,” says Ann.
“It is scary but it is the only thing that can get her well.”
What’s Hannah’s life like now?
“At the moment she is completely immobile and just taking small amounts of liquids and she is awake most of the night in pain. We fear the next stage is that Hannah will have to be peg fed.”
There is a ray of hope.
“The surgery Hannah needs has never been carried out in Ireland before,” says Ann.
“But her surgeon in the UK has carried out the surgery many times. Thankfully, he is also very experienced in working with her joint condition.”
Time is of the essence.
“An application has been made through the Treatment Abroad scheme, but there is no confirmation of any help,” says Ann.
“The replacement joints are made in the States and there is a four-month wait time for them.”
The replacement joints are very expensive.
“The cost of the joints is €40,000 before they begin the process,” says Ann.
“So it is a frightening thought how long this will take. The cost of the surgery will be in the region of €70-80,000 in total; a sum of money that feels beyond us to find.”
With the help and support of her friends and other kind generous people, Ann has found there is €60,000 in Hannah’s fund going towards the essential surgery she needs.
“Another €12,000 and we can order the jaw joint,” says Ann.
“We have €60,000. We need another €60,000.”
Ann and Hannah’s friends, imagining a bright, hopeful future for the teenager, are working on it.
Lace-maker Veronica Stuart and her daughter, Catherine have raised €20,000 for Hannah, making masks.
“My mum, Veronica, has been friends with Ann since primary school in Carragaline,” says Catherine Clancy, Veronica’s daughter.
Mother and daughter got their act together to help Hannah.
“When we knew two years ago that Hannah was bed-bound, we held a number of fashion shows to raise funds for her surgery,” says Catherine.
They put their talents to good use.
“My mother is a qualified lace-making teacher and she has won a gold medal for her lace-making, having revived Youghal lace,” says Catherine.
“Growing up, I learned to sew and how to make lace.
“With lock-down and knowing Hannah needed essential funds for her surgery, mum and I began making masks to raise money for Hannah to get the medical help that she needs.”
The ladies worked diligently.
“We made €20,000 just from making masks so far,” says Catherine, a mother of three.
A stitch in time will help hasten Hannah’s surgery.
“I was in the garden one day handing out masks to my own family and I thought — maybe we could make a few bob for Hannah if we made and sold masks to people,” says Veronica.
The duo made more than a few bob.
“She needs so much more,” says Veronica. “We’ll do all we can to help.”
Catherine and her mother, Veronica Stuart, are friends indeed in times of need.
“I’ve met Hannah a few times when I was younger in mum’s house,” say Catherine.
“Like her mother, Hannah is good with words and she wants to write films and be a script writer.”
Catherine doesn’t have to imagine what Ann is going through, watching her daughter’s life waste away day after day. She is a mother herself.
“I see my own daughter, Tara, who is a similar age to Hannah,” says Catherine.
“She is living her life being part of society, waiting to see what the world has to offer her. The world is her oyster.”
Hannah should have the world at her feet too.
“Hannah has so much potential which is being lost due to her illness,” says Catherine.
“The situation is just heart-breaking to think of, Hannah just wasting away in bed when she should be creating stories and scripts to keep us all entertained.”
Catherine and Veronica are helping to make that happen.
“We are just glad we can make the masks to help boost funds for Hannah’s surgery. Mum has no lace-making classes now due to the pandemic. At least we can use our time helping a good cause.”
Catherine imagines things will work out for her friends.
“If Hannah could have the surgery and get well again, it would be like a dream come true!”
Dreams can come true.
“We never thought in our wildest dreams we’d raise €20,000!” says Veronica.
The sale of Ann’s book, The Secret Book of Parent Training, will also help boost the coffers. It is a great read aimed for parents and children over eight.
“I hope the book will sell well,” says Ann. “So far the feedback is very good.
“There is a really long way to go. Hannah will have to stay in hospital for a very long time.”
No-one can imagine what daily life is like for the close-knit family.
“It is absolute hell,” says Ann.
“Life has ground to a halt. Hannah is in so much pain, she doesn’t get to sleep until 5am in the morning.”
Imagining a sick child in pain all the time, it doesn’t bear thinking about.
“Hannah is very sick,” says Ann.
“She is in constant pain. There is no-one to call, nowhere to turn. It is incredibly difficult to get medical help from any quarter for her ailment.”
It’s not hard to imagine added stress in these hard times.
“I find that this year, people are so stressed themselves, mentally and financially; they feel that they must look after themselves first,” says Ann.
It is hard to imagine that us parents never got trained for the job we signed up for.
‘The funny thing about parents is that they weren’t there until YOU made them’, Ann writes in her book.
“Before you came along, they used to be ordinary people, hanging out with friends, yawning at work, and sometimes watering the pot plant.
“But when you were born you turned them into a very different species — PARENTS.
‘Parents have to be proper grown-ups. They have to take care of you and explain everything about life as you go along. It’s a great idea in theory, except there is one problem. No-one teaches you how to do it.’
No-one taught Ann to explain to her daughter why she can’t talk, eat or run about. Why she can’t feed her.
“All you ever want to do is feed your kids,” says Ann.
“It is shocking that Hannah is still lying there in pain, just left there.
“There seems to be no pathways through the health system; her condition is so rare.”
Normal life is now abnormal for the Hill family.
“We miss our old life,” say Ann.
“Going places with the girls, having fun. Hannah has missed out on a whole chunk of her life. Asha has missed out too.”
Is Hannah a Galway girl?
“Not quite!” says Ann.
“She was born in Clare.”
In her book, Ann writes, “Loving you is more or less the main job a parent has to do.”
Ann is doing the most important job of all for her child. She is putting all her efforts into making her daughter well so that all her dreams come true.
And imagine. Some day, film-maker and script-writer, Hannah Hill’s name will be lit up in lights.
To donate see: https://www.annhillwriter.com/
See Facebook page; Help for Hannah
The Secret Book of Parent Training by Ann Hill can be bought through her website or in Carragline Book Shop. €8.