Mirryn's Story

I am a mum to a very beautiful and special baby girl, now 19months old. She was born at 30 weeks as she was an SCBU (SPECIAL CARE BABY UNIT) baby. After birth her growth was still slow and at about 8 months old I fought to get her seen by a specialist, we found out that she has a genetic condition where her X-chromosome is duplicated on her 5th chromosome due to been born preterm she also got a series of tests preformed like MRI’s, EEG’s and we found out she had delayed myelination causing her delayed development. She still is not sitting on her own but rolls over and is showing signs of trying to sit . She had a series of absence seizures but are now is under control after treatment. Otherwise she is a very happy, loveable and social baby and I just adore and love her to bits ! I am really lucky that I have a strong support of family and friends.

Sometime the help you require to give your child can not be done solely by yourself or family and that’s why I am asking everyone who can help to help. When you have a kid with additional needs you would expect that the NHS supplies you with everything you require......... wrong. Every additional class is chargeable, every aid is competed for so I’ve shouted and wrote letters but there other kids with similar problems who need this as much as my princess.

I applied to The Waggy Dog Project thinking this would be brilliant to help Mirryn communicate and give her a friend who is with her 24/7 and hopefully help Mirryn build a bond or interact.

Mirryn was accepted into this but what I didn’t know is just how much this is going to cost to fund the dog and it’s full training and this is where I need your help.

Tamsons Bar in Easter Road and Raymond have been so very generous to offer the time and venue free of charge to help me raise funds to make this possible for my princess. It would be great if you could come along on the day and help make this dream a reality and help change Mirryn's life for the better.

I am also calling out to all the parents of children with a similar conditions, who are willing to share their stories of delayed myelination or chromosome disorder. I know each child is different but we all need the strength to deal with our precious ones. With just a little effort to help and support each other, if I can help or assist you in anyway I promise I will try.

Thank you all you wonderful people for listening and taking the time to read my story.

Power to the Mums and Dads of every special child !