Hi im raising money for CLAPA to give a little something back as a token of our appreciation for the fantastic support they gave us from birth and continue to do so. My baby girl Halia was diagnosed with a condtion called ‘pierre robin syndrome’ when she was born in darlington hospital. Its also known as ‘pierre robin sequence‘ sequence as its something you grow out of. Babies with PRS have a smaller recessed lower jaw known as ‘micrognathia’ every baby differs on how recessed the chin is but Halia‘s was right back obstructing her airways when she was laid on her back. The smaller lower jaw means the baby’s tongue will be further back than usual. This means it is more likely to ball up and fall backwards into the throat, causing obstruction and therefore breathing difficulties. This is called ‘glossoptosis’. Breathing difficulties can be very difficult to manage and cause a lot of concern, so it’s important the baby is under the care (or at least under the supervision) of a specialist hospital. (Halia was cared for in Special Care baby unit in darlington)As part of this ‘sequence’ babies are born with a cleft palate (the roof of the mouth open) CLAPA supplied us with specialist feeding equipment for Halia and nurses came to us daily ,the support we received made such a hard time feel so much better.We had a SATS machine at home which made us feel settled about her breathing as she could get into a struggle at any point Unfortunately at 8 weeksold Halia stopped breathing and we were rushed to the RVI where they inserted feeding and breathing tubes as the older she got she could make her way on to her back (upto 8 weeks old she had to be laid on her side) and thats when she was getting into difficulty and with working so hard to breathe she was burning off all her calorie intake so we learnt how to change the tubes before we could take her home. The tubes remained until she was around 9 months old it was so distressing to change them. It was so lush to get a proper cuddle rather than have her laid across your knees. Halia had her cleft palate repaired when she turned 1 she was so so brave the after affect was shocking not recognising your own child as she was that swollen and seeing her in the worst pain hurt like hell . In future she may need another operation but only time will tell. She’s had two operations on her ears with due to the glue ear from the open palate allowing fluid to get through. Halia always has bother with her ears. She had a test to see if she has sticklers syndrome as PRS babies can be born with this and also be blind but Halia passed with flying colours. Statistics state that around 50 babies a year are born with PRS and Halia is ‘one’ . Shes a lovely special bright brave little girl and for her,our trooper, I will be doing the great north run this september and for the other babies who are born with struggles.I couldnt run a mile a few months ago so 13.1 mile half a marathon is a massive thing for me. So please donate to the fund even if its just £1 this isnt for me this is for her and all the other babies and to keep CLAPA going with massive appreciation from me. Sorry to ramble on but I just wanted to explain a bit about the condition. Halia still has slight struggles but we can get through anything. My heart was ripped into pieces but the strength you find builds you back up again. Thankyou for reading xxxx