Speaking for those who have no voice!

DREAMS – we all have them…

There are even charities which exist to grant dreams to children and young adults, but I discovered something yesterday which rocked my faith in charities and brought me down to earth with a big bump! It also propelled me to write this post.

First I want you to consider something.  If you have ever had children, think back to the time before they were verbal. Do you remember how you learnt to understand what they needed/wanted? How you, as a parent, were as one with your non-verbal child. Did you ever have people saying your child was hungry, when in fact you knew he/she was simply over-stimulated and needed a nap? No-one understands the needs of a child better than a parent.

Perhaps you have a dog? Dogs are non-verbal, but as a dog owner you learn to communicate with them in a non-verbal way, understanding their needs/wants.

Some children who are born healthy can develop illnesses/diseases which have a profound effect on them.  They may have a normal, happy childhood and then ‘BOOM’ everything changes.  Suddenly they are no longer able to do the things they once did.  Some are robbed of any chance of a ‘normal’ life and exist in a world where they can no longer use their voice to communicate.  Sadly, some children are born with a disease which means they will never be able to talk.

Yesterday I read a Facebook post written by the father of a non-verbal 17 year old, who has a life-limiting disorder and who is on a palliative care pathway.  This father knows that his son loves Disney characters and that a visit to Disneyland would be a dream come true for his son.  His son has not voiced this dream, of course… he has no voice to do so!  The family decided that they would take their son to Disneyland and that they would fund the trip themselves, with the help of a Crowdfunding platform.  Donations are coming in, insurance , accommodation, car hire and flights are sorted.  The family just needs a bit of help with tickets – time is running out.  So the father approached a well-known ‘Wish’ charity to ask for support with the tickets, only to be told that his son needs to express the wish himself! WHAT??? They said what?  They had been told that he can’t communicate and his inability to do so means he can’t be granted a wish! How uncharitable is that?  Another charity which grants wishes ONLY does so to children suffering from life-threatening cancers! WHAT??? I have spent years supporting charities; donating, fundraising, raising awareness, as well as working for some on a consultancy basis and whilst I understand that there has to be set criteria, insisting that a child verbalises their dream is nothing short – in my opinion – of discriminatory.  For a charity only to grant ‘dreams’ to children with cancer is beyond sad.  Mitochondrial disease kills more children than childhood cancer.  It comes in many forms – all life-limiting, some terminal.  No Voices

I spent a few hours yesterday looking at the ‘criteria’ in the small print of several ‘wish giving’ charities, whilst wondering what donors would think of these restrictive policies.  What do YOU think?  If you’re as upset as I am, please share this post and help raise awareness of this poor practice. 

If you would like to support this family, here is Kieran’s GoFundMe page 

Kieran’s father, Paul Preston, created The Children’s Mitochondrial Disease Network (CMDM) in 1998 to support other families, raise awareness and campaign for improved treatment and management of mitochondrial disorders, after the death of his own daughter, Kirsten, in 1992.  She was just 8 weeks old.  Last year, Kirsten and Kieran’s sister, Stacey, died from mitochondrial disease.  She was just 20. She was Paul’s inspiration for twenty years!  This article will tell you more.

I truly believe that Paul Preston and his wife understand their son and know that a visit to Disney would be very special to him. Would it be his verbalised dream, if he could speak? If only he could tell us… because it’s the only way he’ll get support from some of the ‘dream’ charities.

If you would like to know whether Kieran gets to go to Disneyland, please follow Kieran’s Mitochondrial Journey and Wishes Facebook page.

Kieran

 

 

 

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