Justine & Stefan

Brooke started sitting up at 8 months, but was very unbalanced. Progress with milestones was slower than average. She started to walk at around 16 months, but dragged her left foot. Her walking did improve but it was like she was drunk and couldn't walk in a straight line. We knew something was wrong but kept getting 'fobbed off' by the GP.  When my husband returned after a 6 month tour of Afghanistan he took Brooke to the GP and insisted that she be referred to a paediatrician. We then saw the Paediatrician and he did some tests. Nearly 4 months later it was confirmed that Brooke had A-T.

From then on life completely changed. We contacted Kay at the A-T Society as we couldn't believe it was happening. We have both come through some tough times in our lives but this was the toughest. We had advice about benefits and housing and we had countless medical appointments. We were really pleased to get Brooke seen at the A-T specialist centre in Nottingham very soon after diagnosis, Kay managed to sort this for us and helped with accommodation. Things were still very raw , but it was good to go and get some answers from the medical team there and to meet a few other people in the same boat as us. We came away understanding A-T better and ways in which we could help to keep Brooke healthy,  for example, she was put onto background antibiotics by the specialist at Nottingham.

We have recently moved house and are waiting for adaptations to meet Brooke's needs. Things still seem raw at times and we are very scared for the future, but we try and take one day at a time.

Brooke is a very special little girl and we wouldn't change her in any way. It doesn't matter how ill she is feeling she can always manage to show us her gorgeous smile!

In December 2014 Brooke started Immunoglobulin treatment at Great Ormond Street Hospital (GOSH). The hospital asked if we would take part in a booklet they were creating to explain to other families what having the treatment entails. We happily agreed as we wanted to reassure parents and children that the process isn't as daunting as it sounds. So, last year, we were interviewed and had our photos taken and this is the result!! We are very proud of the booklet and glad to have taken part. 

 

 Brooke in Great Ormond Street Hospital Booklet

 *Photo credit - Great Ormond Street Hospital 

 

Justine & Stefan, parents to Brooke who has classic A-T

 

 

Brooke in Great Ormond Street Hospital Booklet