Helena's story
Helena's story, as told by her mother
I’d only heard of Momentum vaguely when friends were raising money for a local charity and other than that was pretty much unaware of who they were or what they did.
After my daughter, Helena Grace had her first Bone Marrow Transplant at Gt Ormond St and when she was finally well enough, she became a shared care patient with Kingston Hospital. Helena was born with an extremely rare blood condition called Kostmann’s Syndrome which meant that she could not fight infections. She was admitted into hospital when she was a week old and had her first transplant just after her first birthday.
I first met Bianca from Momentum when Helena was admitted into Kingston Hospital for treatment post first transplant (which had failed). She came to our room and unobtrusively mentioned Momentum and offered their services should we require them. At first, to be honest, I was hesitant as my primary concern was Helena’s health and keeping her as well as possible and just praying that she was going to make it to the next day.
Bianca quietly organized with the play therapists to come and distract Helena during canulisations, blood tests, etc. Bianca also organized special toys which soon became Helena’s favourites to be cleaned after each use and kept in a separate play area.
Momentum offers many opportunities to families such as theatre trips and holidays in the New Forest to name but a few. Helena was never permitted to go to crowded places especially if there were other children there as she was constantly neutropenic. However, Bianca mentioned that when Helena was finally cured the option would still be available to us. And, indeed we have spent a wonderful weekend in the New Forest where Helena played on the beach and saw cows, sheep, pigs and donkeys. Momentum also made it possible for Helena to go to her first Pantomime and she is now looking forward to going to see Mamma Mia at the theatre.
Momentum have been a great support to us post Helena’s first Bone Marrow Transplant, throughout all her illness and lead up to the second transplant and have remained true to us afterwards. As at her worst, she was in isolation at GOSH, there was not much Momentum could do at the time but ensured that when Helena recovered, she and her family could look forward to some of the shared and valuable family time Momentum offered.