A volunteer's story

I recently went to a genetics appointment for my 7-month-old little boy. When

he was having his new born check, the doctor started asking me lots of

questions which I assumed was the normal thing they did - apparently not!

To cut a long story short they weren't massively happy with some of my

symptoms not matching my current diagnosis and asked if Samuel could be

referred to the genetics team for him but also for myself and obviously, I said

yes.

This appointment was one of the best I'd ever experienced in my life. Lots of

things were discussed and I'm actually now getting tested for a couple of

different things which is incredible, I'd finally been seen and heard and it

means that in the future I won't be the crazy mother trying to force a health

problem on her son, as we've all agreed that although he may be too young

for a diagnosis, he's not too young for us to be proactive with his care as he

is already displaying symptoms.

The main take away from the appointment though was when we got chatting

about how I volunteer for the HMSA. The doctor was so pleased and smiled

and nodded as I told him how we were more like a family and that we could

bounce ideas, worries and stresses off each other and we all instantly knew

what we were talking about and how we were feeling. He said 'your team will

be more valuable than medicine' and it's completely true! They've given me

the confidence to trust my gut when other parents of 'typical' children have

given me doubts and when sometimes all I needed was to vent or just be

heard, they are always there. They are the support system that is so

important when the medical profession don't really know what to do with you

and a support system that really understands and is there for you, that's

worth more than its weight in gold.

So yes, it's amazing what we as a family have gotten from this appointment,

but what's even better is that my HMSA family are and will be the ones to

keep me going as I navigate these next steps over the next few months and

as a bendy mother, I will continue to raise a potentially bendy baby and for

the first time in my life even though some of us are a couple hundred miles

apart, I don't feel completely alone.

Thanks guys!