The story of why I am here.

The story of the girl who's spirit brought me on this journey.

Millie Louise Mules was born on the 31st March 2008 to parents Elaine and Paul. Millie was a very happy baby; she loved her sister Jessica and was always smiling at everybody. It soon become apparent that Millie could not hold her own head up; it was very floppy and she couldn't take her feeds at night time which was the first give away as she loved her food. Elaine went to the doctors with her and they just put it down to colds and chest infections. A couple of ambulances were phoned for Millie as she struggled to breathe and her parents ended up seeing 3 different doctors as they all put it down to the same thing and her being a lazy baby. They kept fighting for help and in the end an army doctor sent Millie to hospital where she was admitted with a serious chest infection. In this visit to hospital her parents got to speak to the consultant. When they relised she had no reflexes, they took a blood test that day and just over a week later it come back that Millie had Spinal Muscular Atrophy (SMA) type 1. Millie spent the rest of her life in hospital, except a couple of days here and there. She had a very large care team and was seeing a lot of specilists as her heart was enlarged too. They gave Millie a life expectancy of 2 years, but Millie was very poorly. Her parents went to see a specialist at Southampton hospital about a breathing machine at night but decided against it as they didn't want to prolong her suffering. Millie went home one more time with all her medical equipment and her Mum trained in all her care including chest physio, but unfortunatly she contracted Pneumonia and was taken back to hospital. Her parents signed a DNR ( do not resicitate) form and they started her on morphine and made her comfortable. It was decided that Millie would be taken to Naomi House Children's Hospice. She was picked up by ambulance and transferred to the Hospice. As soon as the family arrived we are all made to feel at home and Millie's Mum could carry on doing all her care as she had and wanted to from day one, but they were always there if help was needed. Jessica was always kept busy and her parents finally got to take Millie swimming as they always wanted to. They got moulds of her hands and feet, hand prints, a lock of her hair and a memory box. Those 2 days we had there before she died gave us some fantastic memories. The staff were right there to the end and supported all the family through it. Millie was allowed to rest at the Hospice in the Butterfly Room. Millie stayed there for 8 days. It looked like a childs bedroom and her parents got to bring her own belongings in to make it her own room. The staff there helped organise the funeral and anything else that needed doing. Millie still had her own carer up until she left the house and was laid to rest.  They put up large butterflies outside the house to let people know there was a family mourning and a child was in the Butterfly Room. Her parents and sister got to stay upstairs and could see Millie whenever they wanted.

4 years later Naomi House are still in touch with the family and Jessica still goes to Sibling Days. The parents still get invited to Rememberance Days. She is now our little cherub, gone but never forgotten.

Please, please donate at www.virginmoneygiving.com/markverbinnen