Leonie was born on 6th February 2002. The pregnancy was terrible, with an original
diagnosis of heart failure and fetal hydrops, we were advised to terminate to
‘be kinder on her’ as she only had 24 hours to live. Thankfully we decided that if she was going
to hang on, then so were we. After two
amniocentesis tests (both of which came back normal) we were told she was
getting a little stronger. She was delivered
over full term at 42 weeks. All hell
broke lose on delivery. She was in ICU
for three weeks on oxygen and was diagnosed initially with Trisomy 18. We finally left the hospital with a final
diagnosis of AMC of unknown origin. The
first few years were a blur of hospitals, splint, casts, operations and
Velcro….More Velcro than I had ever seen!
Fast forward 5 years and we had been given the all clear to
add to our family. At my 20 week scan
and could see those little twisted legs, hands and feet straight away. Again the first offer was a termination, but
we had already decided that we had done it once, how hard could it be second
time around! Aaliyah was born on 25th
August 2006, unlike her red headed sister; she had a mop of black hair. So from that day everything doubled…..double
the appointments, casting, splinting, bracing, and surprisingly double the
Velcro!
We finally got an official diagnosis of Escobar Syndrome in
2008. Jason and I are carriers and they
have advised us not to have any more children.
Both girls are similarly affected. They have rocker bottom feet (CVT)
neuromuscular scoliosis, restrictive lung disease, CHD, full body contractures,
congenital deafness and reduced muscle tissue.
As a result they are more susceptible to infection and fatigue quickly. There really are too many little extras to list.
Despite all the surgery, the physio, the hanging around for
countless hours in waiting rooms and in recovery and the constant fighting for
absolutely everything, I wouldn’t change them for the world.
Something people don’t realize when they see our Escobar
kids is that they are special. Not just
special in a regular sense, they are truly special. They have such amazing strength, they go
through things that the majority of people couldn’t dream of, and they never
complain. Something I have learned from
my girls, and all the other members of our online Escobar family, is NEVER
underestimate them or tell them they can’t do something. They will only delight in proving you wrong
with a smile on their face!
z.griffiths740@btconnect.com
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