Lourdes, Jerome & Dimity
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What did your diagnosis journey look like?
Once Jerome's diagnosis was confirmed it was a whirlwind of information, more doctors appointments and more tests. We initially thought something was wrong as Jerome was not hitting his normal mile stones and the day care Jerome attended was also concerned which led us to look into it deeper.
What was the initial reaction when you received your children's diagnosis?
Initially I was shocked and thought what the hell is Angelman Syndrome as I had never heard of it then. It was very overwhelming as you get given a lot of information to absorb that doesn't absorb at the time.
What is the biggest challenge you encountered with the syndrome?
Personally my biggest challenge with Angelman is sleep. As their bodies don't produce enough melatonin within their bodies that tell them its time for sleep etc, I have had many sleepless nights and many days functioning with only 3hrs sleep.
We have had other challenges with Jerome such as walking, as Jerome didn't walk till he was 4, he used to commando crawl up until he walked. Eating with utensils is still a challenge to this day as he can't feed himself fast enough with utensils like he can with just his hands. Feeding as a baby was also a challenge we faced with Jerome as it was very painful to breastfeed as he wouldn't latch on properly.
It was a costly period as we had to find the right teat/bottle that suited not only Jerome’s mouth but also helped his colic.
Despite all the challenges, is there anything that you are grateful for?
I am grateful for the way Jerome loves, the way his smile lights up the room and is an immediate mood lifter.
“To remember there will be hard days but that's parenthood,
it's not always Angelman as it can be a roller coaster ride and rides can be scary but fun.
No one ever prepares you for what parenthood brings let alone what your Angelman journey will look like.”
“Information, education and advocacy are key to help spread the word about Angelman.”
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