Our Story

Grace was born full term via emergency C-section weighing just 5lb 4, feeding was very slow roughly 10ml every hour for the first few weeks with little weight gain. We were back and forth to the doctors as grace also suffered reflux so we tried lots of medicines to try and help ease the symptoms. Grace was 9 weeks old and we was referred to the local hospital where they decided to keep her in for a few weeks and noted she had failure to thrive.

It felt like a lifetime we had stayed in that place, we tried so many different milks calorie powders, reflux medications still such slow weight gain. After a few days they placed an NG tube in to try and bulk out the feedings and ease the reflux. A doctor then decided to run some further tests suggesting Grace may have some sort of dwarfism..I was convinced there was nothing wrong in my eyes she was perfect no one could tell me otherwise.

I remember that day 6 years ago…like it was yesterday some things just stick your mind. My partner Eamonn had gone home for a shower and to grab me some more stuff, time was so slow in that place anyone who has experienced it will know. It was a sunny autumn day the doctors were doing the ward round I knew I was due to see someone soon for the daily review. The doctor that thought Grace may have dwarfism came into the room with senior nurses and another consultant. The consultant walked over to Grace who was asleep in the cot bed and started to stroke her hand which I thought was sweet but I could tell bad news was coming, they asked how long Eamonn would be…. I replied “is there something wrong?”……..the doctor said Grace had complications, my first question was “will she be able to talk to me?” I got a blank stare and then Eamonn walked in the door.

We were walked to a little side room and that’s when the news was broken to us that Grace had a rare genetic condition called Wolf Hirschhorn syndrome. The doctor handed me some very vague information off the internet, it was like having my heart tore out. The information didn’t exactly paint a great picture short lifespan, seizures, low immune system, physically and mentally disabled! We spent the next few days researching like crazy and my mum contacted a few other mums from Facebook that she managed to find and they have been there the whole way along walking in the same shoes. I began to realise that we wasn’t alone and that some children could walk and talk and eat independently there was another side to wolf Hirschhorn syndrome there was hope.

I remember trying to stay strong for Eamon and myself I couldn’t really see any other way but just to carry on. We had come home when Grace was just over 12 weeks old with the NG tube. I decided to remove it one evening as Grace had accidentally pulled it out and I was convinced she would eat orally and not need the NG tube. So at  14 weeks old I started weaning her onto food, mainly fruit pots as Grace loved them so much. It all counted as fluids so I was not to bothered about the milk intake and another parent had told me that most Wolf Hirschhorn children are on the small side as its how they built.

Looking back on those first few weeks with the diagnosis people thought Grace would never achieve anything but they were so wrong. I was so wrong its been a learning journey I will never forget. I have cried many times, felt scared of the unknown I have learnt patience and understanding which I never had before.

I could write for hours the things we never thought grace would do but slowly there is always progress always something new. Grace is 6 years old we are lucky no major health issues the development side of things is very slow as with most Wolf Hirschhorn syndrome children. Grace can drink a bottle independently, she can bum shuffle about at an impressive speed backwards and forwards took her a whole year to learn how to go forwards but she made it. Grace has fantastic imaginative play and enjoys playing with dolls and having tea parties. Grace’s understanding of the world is very good and she can respond yes and no to most things and even has a few words.. I mean she can say “happy birthday” repeatedly for a whole day! Grace is always taking every inch of the world in around her.

The thing I most love about Grace is her social skills she melts everybody’s hearts and is great fun to be around, don’t get me wrong she has a very stubborn side as well and when she says no it means no! But I’m guessing that comes from me and her Dad. We also have Rose aged 5 and Ted aged 2. I don’t think Grace would be Grace without her siblings she adores them and they adore her, its been difficult at times bringing a new baby into a family with a special needs child isn’t for the faint hearted its hard work. We are blessed to have Grace in our lives she is the sweetest little girl, funny and so full of character and we love her with all our hearts

Grace continues to teach us every day about her little world she lives in we have all had to adapt, at times its not easy but we carry on. I will update regular updates about Graces progress and achievements and I hope you do the same.

Jay.