Dwarfism Awareness Month: My daughter's words.

[Sheanin]

Just had to share this as I am so proud. My little girl has a rare disease known as Morquio/MPS IVA and as a result, she is considered a little person.

This is dwarfism awareness month, and she just so happened to come out with this little gem today:

"I just told my friends that I am a big girl and I am in year two, but I'm just tiny and they are bigger than me. That's why I see lots of doctors and there are other boys and girls just like me, but we are still the same as the big boys and girls."

She's only 5, but so wise already. Made me a bit weepy hearing this!

 

[Mrs.S.]

Aw that's lovely!

Such simple words, but straight to the point! X

 

[Sheanin]

I'll definitely check that out and contribute what I can once I'm paid

 

[Minimunchkins]

Bless her. .With an attitude & outlook like that, she's going to be the biggest girl in school.

 

[kingleds]

I love that your daughter sees it this way! I wish more people would realise that People with dwarfism are just little people! Nothing more, nothing less.

 

[Sheanin]

Exactly. Some of the assumptions we have encountered based on looking at my daughter stunned me. From people mistaking her for a small toddler and speaking to her in baby language only to be met with, "I am NOT a baby. I am Aoife and I'm 5", right through to those who look at me sympathetically and ask, "So is she ok...um..." while pointing to their head. I've learned to have patience and calmly explain to those who care enough to listen. Frankly I just smile and walk on if they don't.

I'd be chuffed to donate by the way, as I said I promise I will as soon as I can

 

[kingleds]

Aw thank you hun. It would be appreciated but don't feel obliged or anything !

The perception people have I is shocking. The worst one I've seen is a nurse in a hospital staring at my niece open mouthed as we walked past, then turning to her friend & saying 'I wonder what's wrong with her?' at the top if her voice. I couldn't believe that a medical professional would be so insensitive.

 

[Sheanin]

That is unbelievable.

I know what you mean though. A health visitor involved with us made a sustained song and dance about my daughter's height and weight being below average as though it were something I can fix - and that was AFTER she knew about the condition and had it explained to her in full by our advocacy officer (fantastic woman from an organisation who help families living with Aoife's condition).