Helena moves to Great Ormond Street

We first asked for transfer to Great Ormond Street Hospital for Helena on the 4th April. On the 21st of July it finally happened! Helena has transferred from Evelina Children’s hospital at St Thomas’. We really liked Helena’s neurologist at Evelina – Dr Heinz Jungbluth – he was very compassionate, caring, always highlighted the positives and was always happy to answer questions or research things that we asked him about, he even came into work on his day off once just to meet with us and discuss Helena. However we felt that if a trial came up for which Helena was eligible she would have the best chance of entering trials at Great Ormond Street and since it is a much more research based hospital we would receive all the information of the current and up-to-date research.

GOSHHelena’s new neurologist is the much respected Professor Francesco Muntoni and we were very happy to meet with him on the 21st. He has a lovely manner with Helena and allowed her, much to her delight, to take selfies on his camera phone that he was using to document video evidence of Helena’s current abilities to add to Helena’s records. He mentioned much of the current research during this initial appointment and obviously is extremely knowledgeable. We had an introduction to Helena’s Respiratory consultant, but we shall be meeting her for a proper appointment hopefully soon, Helena had a chest x-ray today for part of her assessment and will be having another sleep study shortly.

We also met Helena’s new neuromuscular physio who was also clearly very passionate in her field of expertise. She put Helena through her paces and was really keen to make recommendations and help us with ideas of things to try. She has recommended that Helena be cast for a back brace jacket for periodic therapeutic use, explaining that having a stable base will help Helena with her head control. She will also be cast for AFOs (Ankle Foot Orthoses) which she will wear at night time to try and stop her ankle joints from tightening. Marion agreed with our local teams that Helena’s ankle joints have started to tighten and that her fingers and thumbs (especially on her left hand) have started to tighten.

We were really impressed that just a week later Helena already has an appointment for her casting for the orthoses. The only downsides of our move to GOSH we would say are that Helena’s life expectancy was predicted as 3-4 years of age. The doctors must be asked this all the time and it’s probably almost automatic that they mention it, but we know that every case of SMA is different and we prefer not to have our hope (which is so important in coping with a diagnosis of SMA) knocked as it can take some time to build up that hope again. We obviously hope Helena will be an old lady one day! The other disappointment is that neither of the nearest tube stations (Russell Square and Holborne) are wheelchair accessible, which is a surprise when located near to the country’s most well known hospital. But we have since found out that King’s Cross is wheelchair accessible and not too far away, so will use this one in the future.

One Response to “Helena moves to Great Ormond Street

  • Rita Sinclair
    6 years ago

    I’m so very pleased that you are happy with Helena treatment . I do wish your lovely family all the very best and follow your story and pray that Helena is offered the very best to make life better for you all . Your all amazing xxx

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