anna's blog

Our beautiful, gorgeous little girl, Anna, has leukaemia. She was diagnosed on Monday 5 December 2011.

This is not Disneyland Paris

on January 4, 2012


Tonight, we should have been in Disneyland Paris. After Anna’s Spinal Muscular Atrophy diagnosis in June 2011 (see The Jennifer Trust for more information on SMA), we wanted to organise a special treat for both Nathan and Anna. The diagnosis for Anna’s neuromuscular condition had taken around a year and a half, starting with self referral to our local GP when she was 18 months old and then subsequent referrals to St Johns Hospital (Livingston), Royal Hospital for Sick Kids (Edinburgh) and The Muscle Centre (Newcastle upon Tyne). That process, along with coming to terms with her lifelong muscle weakness/wasting condition which would severely impact on all aspects of her movement and mobility, was hugely difficult. For me, organising something that would give the children absolute pleasure was a way of trying to do something for them since I couldn’t do anything about Anna’s condition itself. The Family Fund had given us Thomas Cook vouchers which covered the cost of 5 nights accommodation in the Disney Park hotels and park passes for the family – what a fantastic charity they are! We had used up about 10 years worth of nectar points to buy Easy Jet flights to and from Paris for all 4 of us. Nathan and Anna (luckily) didn’t know anything about it – we were going to tell them on Christmas day.
Instead, Anna and I are in isolation due to confirmed shingles (quite literally – this is the sign on her cubicle door)

and Peter and Nathan are at home.
Mickey, Minnie and all their friends will just have to wait. We know we will go another time and it will still be very, very special.

What about our travel insurance? Well, we are insured but the excess seems to be £30 per person per section of the holiday. So we would end up paying a huge excess to recover vouchers for a holiday we couldn’t use. That seems ludicrous! Rather than do that, we have gone directly to Easy Jet and Thomas Cook.
Easy Jet have responded fantastically well, agreeing to refund all flight costs at no charge.
We are still waiting to hear if Thomas Cook will look at the circumstances and be flexible.

Anna is sleeping. She will wake in the night, hungry, but for now she is happy and comfortable.


5 responses to “This is not Disneyland Paris

  1. Heather says:

    Oh Ann Marie 😦 that is so tough. You will get to Disneyland after all this, and it will be even more special! Anna is doing brilliantly – mum told me that she doesn’t complain. She is just as resilient as her mum! All my love Xxxxxxxxx

  2. clare ( one of Ann Marie's 3 sisters) says:

    hope anna gets well soon xxx love zak (annas cousin)

  3. Mary says:

    It’s so impressive how you , Peter, Anna and Nathan are handling this really rough time. Sending you all lots of love and support as always, Mary xxxx

  4. Vicky Morgan says:

    How blessed is Anna to have such a fab Mum and family, thinking of you and pray the isolation is not for too long. Vicky & Peter Morgan

  5. Gillean McCluskey says:

    Just catching up with this news Ann Marie and obviously sad to learn the trip wasnt possible. However, when you do all get there, you wont take a minute of that special time together for granted, that’s for sure. Thinking of you all and a special prayer tonight that the shingles eases really soon.

    Gillean, Tom and Sam

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