My story about a beautiful little girl I was lucky to know and whose parents are truly amazing.

The ideal place for children with complex care and needs 

Blanka was born a perfectly healthy girl, little prematurely but all seemed well at first. Shortly after turning six months old, her parents noticed that she started losing her skills, smiled and vocalise less than she used to.  Although the doctors assured that Blanka was ok, the worrying symptoms continued. One day before her first birthday the neurologists discovered that Blanka suffered from a very rare genetic metabolic disorder called Galactosialidosis, which in its infantile form usually progresses very fast. This began a new chapter, as the whole family had to come to terms with the fact that Blanka’s condition was life-limiting. They were referred to the Shooting Star Chase Children’s Hospice shortly after the diagnosis, where the professionalism and friendly approach of the paediatric nurses, the positive atmosphere were exactly what they needed. During her stays, Blanka loved the Hydrotherapy Pool sessions, found the Sensory Room really relaxing and enjoyed the Music Therapy. Blanka’s condition was stable for many months and the family learnt to take every day as it comes, ensuring she has the best life possible. She started to seriously deteriorate when she had her first apnoea episode which meant she stopped breathing. She spent two weeks in the hospital and then was transferred to the Shooting Star in Hampton where she was closely monitored by the Palliative Care Team from Great Ormond Street Hospital to ensure she was receiving the correct medications. Shortly after, the end of life care plan was put in place. Blanka died peacefully in the cosiness of her home in June 2011. The Shooting Star team made it easier for the family to go through this last and most difficult of journeys, as they helped to enhance the quality of life filling it with the most precious of memories.

Shooting Star CHASE has been supporting Blanka for nearly one year. Since she died, Blanka’s family have received bereavement support from the hospice. Every year the family attend special Memory Days at the hospice together with other families who have lost their child. The money you raise helps families like Blanka’s have a better quality of life and precious time together.

 So please dig deep and donate now.  

Thank you 

Claire x