From the UK, meet Penny!

Hi Jessica. …just wanted to share Penny’s story….Penelope was born via planned c-section 11 months after her sister, Harriet.

It was perfect, she was perfect!

2 days later I was being allowed home and signing the hospital forms to leave when I noticed she was a funny blue colour….I asked the midwife to pick her up. The midwife picked her up slapped her on the back but no response so she ran off with her.

My husband, Andy was in his way up to the room with the car seat and saw a baby in resuscitation. ..it was only when he got to the room he realised it was our bundle!

Soon the midwife brought her back saying she had mucus stuck and she would be fine.

I had a shower to calm down and left her for cuddles with her daddy…when I came back I was getting ready when Andy brought her over to me to ask if this is what she did before…she was solid and blue…I told him to run and shout for help!

After a while the neonatologists came to us to tell us they were taking her down to the NICU…..and this is where she stayed for 6 weeks having up to 30 seizures a day…they tried so many different medication and we were transferred, a couple of times, to our local children’s hospital for EEGs.

Our last hope was phenytoin….we started her on it and when we came to her in the morning a miracle had happened…she had none overnight!

And then this continued….we were eventually released unknown what was to happen and facing the very real fact that our perfect new baby was going to be disabled.

On Christmas eve 2014 our consultant rang us to tell us, 8 months after testing, that Penny had KCNQ2 gene positive.

In true Penny style she has defied everyone…and at 5 next week she can walk, she can’t talk but uses makaton, she understands everything (and although pretends to “new” people she can’t!!) And is amazing.

Her sister is incredible with her and they have both shown us such determination I will never say “I can’t” ever again!!

Becky xx

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