FIGHT FOR MELODY: terminal child should spend her days at home with loving parents.

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The world is my child and to my child I am her world. The parents of any child with Rett syndrome would probably quote this because we understand our childs complex needs best. Rett syndrome robs our children of their ability to talk, walk, play, eat and live a quality life so parents understand that each day is precious and if you can have your terminal sick child smile with love in her eyes then that is the most precious gift a parent can have. Don't take that away from this family who deserve to spend the last days with their child in dignity. This campaign is about change..a plea to the public to persuade social services and doctors to listen and do what's best.

When you love your child you will do anything for them and when you see your child suffering, their eyes pleading with you for help then you need to do something. No loving parent can bear to watch their child writhing about in pain. But for parents of Melody aged 11, who suffers a rare genetic brain disorder called Rett syndrome, from Croydon in Surrey, Karina & Nigel Driscoll are forced to endure having NO say in their daughters care plan even though she is terminally ill. There is the fear that the social services can take their daughter away and put her in foster care rather than dying in a loving home. I am a mum of a Rett child and I have many friends who give all the love they can to their sickly child. We often know whats best and know our children better than anyone. We have nurtured our children for years and the threat of not being with our child when they are terminal is something that doesn't sound humane in any way.  Melody is not at risk of harm in any way, everyone can see how loving Melody's parents are, so why can't they enjoy some quality happy moments being pain free and make lasting forever memories where they remember the final moments which culminated in Melodys life being celebrated and remembered as positive, not dying in horrendous pain? 

I spoke to Melody's mum and the first thought on her mind was 'Don't take my baby away'. These are the frightened words of a loving mum who is battling with social services and hospitals to make a change in her child's life. She is campaigning desperately by going public with her story trying to gain support from the general public. We all know that when you have a disabled child there's always a fight on your hands but this is about equality of rights and dignity and having the choice to have your sickly child cared for at home and pain free.

Melody suffers a brain disorder called Rett Syndrome affecting their child's body and she can no longer walk and talk. Their child is in severe pain daily and she was administered morphine which really helped take the pain away and give their daughters life back. She was smiling again and had her spark back. However, doctors at Kings college Hospital want to take the pain medication away because they argue its destroying her liver and the parents refuse to accept the decision because they cant tolerate their child suffering any more than she needs to. 

What is morally right? what would you do for your child if you had cared for them day in and day out for 11 years? As a mum of a Rett child who faces a battle on a daily basis with her condition I would hope that the support team involved in the care plan would listen to my voice as a parent. My heart is behind those poor parents and I know many other Rett parents will be too. The hospital feel they are doing the right thing by taking Melody off morphine but will her quality of life really be improved for the better if pain is making her cry out and never smile until the day she dies? 

We need support from every one who feels this story has touched their heart. We need to change the decision about Melody's care plan and get her home and smiling again so that she can spend her last days having quality rather than quantity.  We need the parents to be heard and their voice spoken so that they have equal rights in speaking up for their child who cannot speak or say how she feels.

Please do whats right and listen to your inner voice and support this family with your signature to make change for the better. No parent should go through this horrific ordeal as they have enough to deal with with in coming to terms with their sickly child and how Melody will one day meet the angels one day soon. So let it be a happy ending, one with love, one with peace and one with smiles so that Melody can be remembered as child with a beautiful smile that brought a smile to everyone who ever met her.

Please help this happen soon, as everyday counts. You have the power to  make a massive difference to the whole family. Imagine that! PLEASE SIGN THIS PETITION TODAY  and change the minds of the people who are dictating what is best for Melody.

 

 



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