Your Independent: 'No family should face this alone'

Our daughter is perfect

We recognised every word of Tussie Myerson's story. Our daughter, Clementine, is five years old and has profound mental and physical disabilities. Like Emmy, she is dependent on her parents and other carers for everything.

She is fed overnight via a tube, takes seven different drugs everyday and will need major surgery soon to correct a problem in her hips which, without surgery, will cause terrible pain as she gets older. Like Ms. Myerson, we have been told that Clemmie is unlikely to live a long life, though nobody is prepared to commit to what that actually means. Emmy is 18: Ivan Cameron was only a little older than Clemmie is now when he died.

We have also faced the problems that Emmy and her family have faced in getting help with the care that Clemmie requires. I wouldn't want to criticise those who do provide a service to us and our daughter – we have a car provided by Motability, a funky wheelchair and Clemmie goes to an incredible school. However, in terms of day-to-day help with basic needs, Clemmie has assistance from an agency carer for only three hours each week and has been allotted eight nights respite this year in a local children's hospice. While we are grateful, the extra care is clearly inadequate.

So much that is written about life with profoundly disabled children ignores the joy that only they can bring. Clemmie doesn't "do" anything much but the simple fact of "being" is enough to have a profoundly positive affect on those who spend time with her. Life with children like Clemmie is undoubtedly bittersweet, but that sweetness should not be underestimated. Mothers of unborn children with disabilities of varying degrees are often encouraged by the medical profession and indeed by society to terminate those pregnancies. There is, consequently, a huge fear attached to bringing up a child with disabilities and from our experience this fear is unfounded. We would, genuinely, not have Clemmie, with her mountain of additional needs and short life expectancy, any other way. She is perfect.

Matthew and Rebecca Elliott

Great Cornard, Suffolk

No family should suffer

An extraordinary story and beautifully expressed. It resonates because we had a similar tragedy in 1996. Jack suffered some trauma in the maternity unit in Dublin. He probably choked to death and was then resuscitated. He lived for only 22 months and couldn't swallow, see or hear. But we learnt so much. We could not believe that the state did not recognise babies like Jack. We resolved that no other family should walk through the same dark valley as Jack and ourselves, so we set up the Jack and Jill Children's Foundation. It brings early intervention home respite to babies and their families all over Ireland from diagnosis until four years of age.

Since 1997 we have brought succour to more than 1200 babies and presently have 308 on our books. Interestingly, if you look at my diary, 40 per cent of my time goes on admin and fundraising and 60 per cent on being an advocate to get for my families services that the state should be proffering. our annual budget is about €3m, of which the government provides no more than 18 per cent. Our donations to our families to help pay for nursing and care run at €135,000 a month. I've always hoped that someone would replicate a similar service in England. Please take a look at our website, Jackandjill.ie.

Jonathan Irwin

CEO of Jack and Jill's Children's Foundation

30 years and no change

As a mother of a PMLD (profound and multiple learning disabilities) child who was born in 1978 and died in 1990, I sympathise fully with Tussie Myerson and her family. From her description of Emmy's condition, and her endless battle with the authorities, I realise very sadly that very little has changed in the last 30 years.

When our daughter Lynne was born, nothing seemed untoward until six months after birth and vaccinations. From that point onwards our world tumbled and we had to confront the machinery of the state. As Lynne cried even more and didn't reach the usual milestones, she was admitted to Great Ormond Street. Test after test revealed nothing. The medical establishment was baffled. My husband and I were told that Lynne would never develop normally and nothing could be done. Her life would be very short. Her condition was such that we were sent home with a cocktail of powerful drugs and given a six-monthly appointment.

It had been difficult for us to admit that there was very little we could do. We tried everything; acupuncture, homeopathy, Doman Delacato patterning method, very often with many derisory comments from the healthcare professionals.

Eventually, Lynne was statemented and accepted at a special needs school (another hurdle to come to terms with), where she had some good quality time when she was not ill. She was very gregarious and enjoyed the company of other children. She also especially enjoyed music lessons. Holidays were a nightmare for her, she was isolated and in need of stimulation. I gave her my full attention very often at the expense of her older sister, who also found the situation very difficult to cope with. When one has a handicap child, the whole family is handicapped.

Families such as ours need so much help, emotionally and physically, and is should not be at the discretion of the local council but should be a legal right. It is expensive, but so are many other areas of society. Our children do not have the ability to fight or to campaign, only parents can do so, but they are often exhausted by the task in hand.

Like Tussie Myerson, I agree fully with the concept of quality rather than quantity. If life on this earth has to be short, let us make sure that society is going to come up trumps. The pro-life lobby is very vociferous, but not to be seen very often when a handicapped child or young adult is very unwell in the middle of the night (or day). And then, when death occurs... yes, it is a relief, but deep down one's heart keeps bleeding. Soon it will be 20 years that Lynne has gone, and not one day has passed without thinking of her. When one has a disabled child, one loses them twice. Of course it has not all been negative. We have met remarkable, brave individuals and have had the privilege to be the parents of one of them.

Cathy Bassett

By email

Give us proper support

I have twin daughters, Emily and Jessica, who turned nine last week. Jessica was the first-born twin, and thankfully does not have any disability. Emily definitely drew the short straw and has cerebral palsy, severe learning difficulties, epilepsy, hydrocephalus and a vision impairment, as a result of a severe brain haemorrhage around the time of birth. Emily is not able to walk, but she can sit up and she shuffles on her bottom at home, to get around the ground floor of our house. She has limited speech. Her epilepsy at the moment has stabilised, and tomorrow it will be a year since her last seizure, but we can never take it for granted that she won't start having them again.

I was the main carer, at home with them from birth until a few months ago, when my husband Scott gave up his job to take over as the unpaid carer (apart from receiving Carer's Allowance, a pitiful £55 per week). I am now looking for work, and the financial pressure is palpable. We simply had to do it, as after nearly nine years, I was physically and emotionally exhausted. Having always been upbeat and positive, earlier this year everything fell apart, and there was not a day in months when I didn't cry. I am absolutely devoted to my family, and very happily married, but I kept contemplating leaving, as I couldn't see any hope for the future. I didn't,of course, but I needed the reassurance that there was an escape. In reality, the respite has come from my wonderfully supportive husband, but I'm very worried about finding employment and earning enough to support us.

So much more could be done for disabled children and their carers. The Carer's Allowance is the lowest of the means-tested benefits, and equates to less than £2 per hour to do such a vital job, saving the state millions each year. It should be increased to a level which reflects the real cost of having a disabled child, and in particular the loss of earnings.

Despite everything, we have two beautiful daughters who are both happy and well-adjusted, and I do feel grateful for all the positives in our life, but it's important as parents that we can be open and express all of our emotional responses to our situation. This time last year I gave a talk about being Emily's carer in front of 500 people at a charity ball. This was the catalyst for changing our lives because it made me realise that what I've done is extraordinary and should be properly recognised and acknowledged. If only being a carer really did receive that level of recognition, and most importantly, proper support.

Charlotte Palmer

Welwyn Garden City, Herts