Mirryns waggy dog tale
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MIRRYNS STORY
Mirryn is a beautiful little girl, she's almost two years old. She was premature, born at 30 weeks she was taken straight to the Special Care Baby Unit. Her developmental growth was and is very slow, at about 8 months old, I fought to get her seen by a specialist. I knew there was something really wrong.
Mirryn has had a battery of tests performed, MRI’s, EEG’s, countless bloods taken, genetic testing etc. etc. It was discovered towards the start of this year that she has delayed myelination and chromosome 17-12b disorder, it is extremely rare, so rare that Mirriyn has now been placed on a world wide database to see if there is another child with the same condition, I am very hopeful that a consultant from somewhere around the world may have seen this genetic condition or recognise these symptoms and help give us more understanding of Mirryns condition and how best to treat it.
Mirryn can't yet sit on her own but she does roll over and is showing signs of trying to focus which is so promising.
Mirryn did have a series of absence seizures a few months back but luckily these are now under control through treatment.
Due to Mirryns condition she finds it very difficult to communicate and we (Myself and my son Alexander) are learning sign language in the hope that this will encourage her development.
Above all this, Mirryn is a very happy, loveable and sociable little girl. I adore and love her to bits of course! My daughter is one in more than a million and I'm so very proud that the work we have done and will continue to do with Mirriyn will help other children in the future. They'll know more, they'll learn from Mirryn, she's very precious.
I am an extremely lucky lady that I have such a strong support network as every day does come with its battles......without specialised seating Mirryn can't eat..... without standing frames and special shoes she can't stand independently....... without specialised lighting Mirryn will not/cannot fix and follow with her eyes etc. etc.
Life can be very challenging but each day also brings something new to feel hopeful and positive about......Mirryns therapy is definitely helping strengthen her muscles which was such great news to hear and see.
When you have a child with additional needs, perhaps, like I did, you would expect the NHS to supply your child with everything they need to help in their daily life.........sadly not. Every additional class is chargeable, every aid is competed for, I’ve shouted loud and I've written letters but there are other children with similar needs who require help just as much as my princess.
I applied to The Waggy Dog Project, the thought is that this will help greatly with Mirryns communication skills. Hopefully Mirryn will build a bond and this will help so much with her interactions. She'll also have a permanent best buddy.
I am please asking for any help anyone can give. I'm fundraising to put Mirryns Waggy Dog puppy, Alvie, through his training as an assistance dog. It costs around three thousand pounds to put a dog through full training and sadly this is not funded by the NHS and there are no grants I can apply for to help.
Already I can see the interaction and Bon grow between Mirryn and Alvie, Mirryn reacts when she touches his coat and when Alvie gives her his ritual morning kiss. Alvie’s favourite sleeping place in under Mirryns chair.
Hibernian supporters club have been very generous and given us their venue free of charge to help me raise funds to make Mirryns Waggy Dog tales come true. It would be great if you could come along on the night and help make this dream a reality, help change Mirryn's life for the better.
Mirryns 80s themed (Fancy dress optional but you know you want to!) charity night is Saturday 13th October 2018 in the Hibernian supporters club 7pm-12pm.
Tickets are £10 available through myself, The Hibs Supporters Club and Tamsons bar. We're having a DJ, live band, buffet and raffle.
I'm also looking for raffle donations pretty please! Anything greatly appreciated!
It's Mirryns second birthday on the day of the fundraiser. I'm going to make sure it's a special night. Please visit my event on Facebook https://www.facebook.com/events/236674093690769/?ti=icl
Sincere thanks for taking the time to read this, I greatly appreciate any help and support you can give.
Mirryn is a beautiful little girl, she's almost two years old. She was premature, born at 30 weeks she was taken straight to the Special Care Baby Unit. Her developmental growth was and is very slow, at about 8 months old, I fought to get her seen by a specialist. I knew there was something really wrong.
Mirryn has had a battery of tests performed, MRI’s, EEG’s, countless bloods taken, genetic testing etc. etc. It was discovered towards the start of this year that she has delayed myelination and chromosome 17-12b disorder, it is extremely rare, so rare that Mirriyn has now been placed on a world wide database to see if there is another child with the same condition, I am very hopeful that a consultant from somewhere around the world may have seen this genetic condition or recognise these symptoms and help give us more understanding of Mirryns condition and how best to treat it.
Mirryn can't yet sit on her own but she does roll over and is showing signs of trying to focus which is so promising.
Mirryn did have a series of absence seizures a few months back but luckily these are now under control through treatment.
Due to Mirryns condition she finds it very difficult to communicate and we (Myself and my son Alexander) are learning sign language in the hope that this will encourage her development.
Above all this, Mirryn is a very happy, loveable and sociable little girl. I adore and love her to bits of course! My daughter is one in more than a million and I'm so very proud that the work we have done and will continue to do with Mirriyn will help other children in the future. They'll know more, they'll learn from Mirryn, she's very precious.
I am an extremely lucky lady that I have such a strong support network as every day does come with its battles......without specialised seating Mirryn can't eat..... without standing frames and special shoes she can't stand independently....... without specialised lighting Mirryn will not/cannot fix and follow with her eyes etc. etc.
Life can be very challenging but each day also brings something new to feel hopeful and positive about......Mirryns therapy is definitely helping strengthen her muscles which was such great news to hear and see.
When you have a child with additional needs, perhaps, like I did, you would expect the NHS to supply your child with everything they need to help in their daily life.........sadly not. Every additional class is chargeable, every aid is competed for, I’ve shouted loud and I've written letters but there are other children with similar needs who require help just as much as my princess.
I applied to The Waggy Dog Project, the thought is that this will help greatly with Mirryns communication skills. Hopefully Mirryn will build a bond and this will help so much with her interactions. She'll also have a permanent best buddy.
I am please asking for any help anyone can give. I'm fundraising to put Mirryns Waggy Dog puppy, Alvie, through his training as an assistance dog. It costs around three thousand pounds to put a dog through full training and sadly this is not funded by the NHS and there are no grants I can apply for to help.
Already I can see the interaction and Bon grow between Mirryn and Alvie, Mirryn reacts when she touches his coat and when Alvie gives her his ritual morning kiss. Alvie’s favourite sleeping place in under Mirryns chair.
Hibernian supporters club have been very generous and given us their venue free of charge to help me raise funds to make Mirryns Waggy Dog tales come true. It would be great if you could come along on the night and help make this dream a reality, help change Mirryn's life for the better.
Mirryns 80s themed (Fancy dress optional but you know you want to!) charity night is Saturday 13th October 2018 in the Hibernian supporters club 7pm-12pm.
Tickets are £10 available through myself, The Hibs Supporters Club and Tamsons bar. We're having a DJ, live band, buffet and raffle.
I'm also looking for raffle donations pretty please! Anything greatly appreciated!
It's Mirryns second birthday on the day of the fundraiser. I'm going to make sure it's a special night. Please visit my event on Facebook https://www.facebook.com/events/236674093690769/?ti=icl
Sincere thanks for taking the time to read this, I greatly appreciate any help and support you can give.
Organizer
Vicky Cunningham
Organizer
