My daughter was born 4 weeks prem with radial club hand. Her tumb was dangling off her arm was at a.90° angle and got worse with time. She was 4lb. She then became very poorly with necrotising entrocolitus. We allmost lost her many times and we were told she wouldn't survive the fight. After 2 months of being on tpn and null by mouth
She did!

She had trouble keeping her Wight up and using her bowels .she had to be seen once or twice a week in alderhey for about six months. Then we found out her tumb was not saveable and it had to be removed. From the stress I had 2 strokes in one year one at the age of 23 and the other at the age of 24 I then had a bread down and became agrophobic. For allmost 3 years I could leave my home. Mia was very delayed in sitting up then she was 1 year 8 months when she could final walk. Not fat but it was enough. Her walking quickly deterioratied. We found out she has fluid inside her spinal cord. If this.expands it will destroy the spinal cord and she will loose the ability to walk again. They also found she had a tether spinal cord. We hoped this was the reason for the loss of function in her legs and not the fluid. She had surgary and within four days she ran fr the first time In her beautiful life!
She then needed an external fixator put on to grow and alter the bones in her arm. Weekly visits to alderhey for 6 months and soo much more but I. Don't have room
My friend quit her.job and became my full time carer to help look after me while I look after mia. She took us.to and from hospital and did the school run. I am finally back out in the world but the hospital is far and mia cannot use public transport if there was a bump all the work on her arm would be detected as the bone is thin and very fragile. Basicly I am taking lessons and want to be able to take my daughter my self. Do school runs myself and let my freind breathe for the first time in 3 years. Money is tight as I have been unable to work and my parter works hard