I have a daughter Victoria who is now 21 years old and who has Turners
syndrome. Victoria was diagnosed at birth because of various physical
characteristics and a dislocated hip and very poor feeding. At that point I
was led to believe that she would either die or be very educationally
challenged! Because of this every birthday is still a celebration for me.
Victoria has done incredibly well and I am a very proud mother.
It has not always been easy; Victoria would not eat properly, her limbs were
out of proportion to her body, cutting her nails was a nightmare, she could
not read facial expressions and her behaviour was challenging. At the age
of 4 she started growth hormone treatment and carried on for 10 years. The
results have been amazing she is now 5’ 3” as opposed to possibly being 4’
8” and her bone density has improved fantastically. Her limbs are now in
proportion to her body, she has not had the weight problems sometimes linked
to Turners syndrome despite having lymphodema as a baby. Giving the
treatment was difficult, Victoria never came to the point where she would do
her own injections and never found them easy, thankfully I had very
supportive friends to help me through the difficult times.
At junior school Victoria did OK but found making friends difficult and
school work was hard. At secondary school she worked hard and did well but
I am convinced the weekly study support she had privately made a huge
difference as it enabled her to review work and improve her study skills.
Victoria enjoyed languages; apparently Turners girls have a natural ability
and took part in every activity and exchange trip available. Knowing
Victoria had Turners syndrome and the support and information I gained from
being a member of the CGF meant I could observe and take action where
necessary because I was aware of potential difficulties. I was also able to
seek help early on and so assist her in finding solutions.
Victoria has always had to work very hard to achieve her full potential and
still finds it hard that despite working much harder than most other
students (and they say she works hard too) her results do not truly reflect
her ability.
Victoria passed her GCSE’s and A levels and has just started the fourth year
of her degree at Lancaster university. She is studying European Business
Management, she spent the first 2 years of her course in Reims, France which
included a 6 month work placement and now is expected to spend 2 years in
the UK. However, she was unable to get a 6 month placement in England but
found one in Paris. So at present she is working in France and will return
to England at Christmas for the final part of her degree.
Victoria has always known she has Turners syndrome and has not let it stop
her from doing anything. I have seen my role as encourager and allowing her
to see what she can do…..letting go; a process that is hard for many parents,
but very important.
My role has been to support and encourage Victoria and give her
opportunities to meet new people and make the most of her love of dance…
encouraged because it is good for exercising and reducing the recurrence of
lymphodema
I have been a single parent since Victoria was 4 ½, and understand how hard
it can be. Once Victoria went to university I decided it was time to
discover what my potential was. As a result I am now at Goldsmith’s
College, University of London studying a BA Ed Design Technology for
Secondary Education – I will become a secondary school teacher after my 4
year degree programme. I have just finished my second year. My experience
with Victoria has encouraged my to desire to provide encouragement for all
students to succeed and give them a sense of hope and success.