Martha’s transition to the new EHCP hasn’t gone as well as
we’d hoped. As well as large gaps in the provision Martha needs (such as 1-2-1
support at all times) we were also concerned that the local authority school
could not meet Martha’s multiple and complex needs. Having tried to resolve
this for many months Martha’s case ended up going to a tribunal held at the
Royal Courts of Justice in London. The outcome of this was that while the EHCP
is now a lot more specific about what Martha needs in terms of input and
support requirements, the judge on the day felt that the local authority school
could meet Martha’s needs so has ruled that Martha should start at Manor Green
for her secondary education in September. While we still have significant
concerns about the schools ability to fully meet Martha’s needs we now have no
option but to see how things go. We will continue to monitor the progress of
the school to meet Martha’s needs and highlight any issues.
Martha is 13 and has a very rare chromosome microdeletion (16p13.11) affecting approx 50 people worldwide. Martha is globally developmentally delayed, has no speech, very limited gross and fine motor skills, severe learning difficulties, a mild hearing loss and wears glasses for bilateral astigmatism. Martha has no independent mobility so cannot roll, crawl, stand or walk. Martha also has developmental dysplasia of the hip and complex epilepsy and severe scoliosis.
Martha McCarthy
Tuesday, 21 August 2018
Martha has fun at Disneyland Paris on a Family Holiday
Martha enjoyed a few days away over the summer holidays with
her family at Disneyland in Paris. Travelling via the Eurotunnel in her
specially adapted wheelchair accessible vehicle (WAV) Martha and her family
drove to the Disneyland resort on the outskirts of Paris.
Safely Arrived at the Disneyland Parc in Paris |
Staying on resort made life much easier as we could walk from the accommodation to the attractions and Martha really enjoyed mealtimes trying all the different foods on offer.
Martha having Fun in the Sun |
Martha’s favourite ride while at the Disneyland Parc was “It’s a
Small World”. Martha loved this ride and the music. At home Martha has a doll that
plays the song and Martha was so excited to be in the park enjoying the ride.
Martha at It's a Small World ride |
Martha’s 11th Birthday Celebrations and Panto Visit
Martha turned eleven years old on 16th January
and we celebrated in the usual way with a family gathering before a trip to see
the Quince Players annual pantomime, this year Little Tommy Tucker.
Martha with her Birthday Cake |
Everyone
had a lovely time and as both Mummy, Daddy and sister Orla were all involved in
the production it really was a family affair.
Happy Christmas from Martha
Martha celebrated Christmas 2017 at home with her family and
her Grandad (Golf) and Nana came to visit.
Martha Wearing her Christmas Jumper |
Martha had a lovely time opening all her presents
and she particularly enjoyed tucking into her favourite food for Christmas
lunch.
Martha Opening some Presents |
Martha with Mummy, Orla, Nana and Grandad Golf. |
Merry Christmas from Martha to all of her family, friends and supporters.
Martha In Hospital with Pneumonia
Martha had been suffering from a cold that turned into a
chest infection. After several weeks of antibiotics Martha was rushed into
hospital overnight on Wed 25th Oct where she was eventually
diagnosed with pneumonia.
Martha in Frimley Park Hospital |
Martha ended up staying in Frimley Park hospital for 5 days
while they worked to bring the pneumonia under control. We are very thankful to
all of the staff at the hospital for taking such good care of Martha. After a couple more weeks of convalescence Martha thankfully returned to full strength.
Martha’s Grandad Pat Sadly Passes Away
We are very sad to report that Martha’s beloved grandad Pat
passed away peacefully in his sleep on 2nd Oct. Grandad Pat was Martha’s biggest supporter and did everything he could to help her.
Martha with her Grandad Pat |
While his passing was a big shock for the family it will be, in time, comforting to know that Grandad Pat led a full and happy life and he was still active and enjoying life until the end. Martha and her sister Orla will miss their grandad very much.
Martha’s Innowalk Arrives
We are very excited to say that the Innowalk from Vida Global finally arrived in mid-August. Martha
started to use this piece of specialist equipment, shipped from Norway, to start a daily exercise programme to strengthen her core muscles and stretch/stretch her arms and her legs.
Martha Trialling the Innowalk |
Martha uses the machine for 30-40 minutes at a time and not only is it great
for exercising/toning muscles but it’s also amazing for cardiovascular exercise
– something that Martha has had very little up to now. Martha loves being in
the machine and we have high hopes that this will be another positive step in
our aim to help Martha be as independently mobile as possible.
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