Su and I had been enjoying married life for sixteen years when we had the news that our team of two was about to become a family of three. We went through all of the planning that all prospective parents go through with a few added complications including moving job, moving country and moving house…twice!
A further complication came when our daughter, Ellie, was born five weeks early and we were told almost immediately that she had Down syndrome. All of the planning for our special little girl seemed to be in turmoil. We entered a strange world and we felt lost and unsure, unsure of what the future would hold for our wonderful little girl.
Within 24 hours, we were told that Ellie needed emergency surgery to save her life and we were faced with the prospect of possibly losing our wonderful, tiny little girl. The surgery was a success however she was left with a colostomy and she would need two more surgeries within her first year. We were also advised that she had three holes in her heart.
Our life was thrown into a constant trek to doctors, hospital clinics, consultants and Specialists. Yet, somewhere amongst all of this, our wonderful little girl began to thrive, and what's more she began to teach us what life was really all about.
Su found out about this place called Steps where some other parents were taking their children with Down syndrome. We got in touch and Ellie was enrolled. Ellie and Su started at Steps when Ellie was six months old. Su joined other parents of children facing similar challenges and shared information and experiences whilst our children were learning and developing under the direction of the staff from Steps.
With Down syndrome, Ellie has speech and language difficulties, a learning disability and problems with gross and fine motor skills. The staff at Steps ensure that we focus on these areas and more in order to develop Ellie to her maximum ability. We attend weekly sessions which focus on the development of motor skills and communication skills with specialist staff trained in the methods of Conductive Education. The focused and intensive sessions have really helped Ellie to develop and we are convinced this helped her to walk before her second birthday.
Ellie really loves attending Steps and both Ellie and Su look forward to the sessions. The staff show great empathy and are very supportive of everyone's needs. Ellie is now three and a half and we have developed and grown so much as a family in that time. We now understand Down syndrome and the impact it will have on our family and on Ellie's future. We are in a much happier place than we were in July 2006 and Steps has made a huge difference to us.
Ellie and our family would like to thank all of the people involved in Steps; the staff, volunteers, trustees and other parents. We would like to especially thank the other children for showing us not to consider ourselves as a disabled family, but as a family with a little girl that is coping with a disability.
Steps has helped to change our lives.
Tony (Ellie's dad)