It’s Monday again… and with a heavy heart, I don’t feel very marvelous. With October being Dwarfism Awareness Month, I feel it’s only fair to educate about dwarfism as a whole, and not just the most common form (achondroplasia)- because as many want to say, “I’m just small,”… that doesn’t apply to everyone.
On October 7th, our community lost a young member. Christian, just 3 1/2, succumbed to his lethal form of dwarfism, Thanatophoric Dysplasia. Many children born with this form of dwarfism pass after birth, but Christian was a fighter. Not only is his passing too soon, but his baby sister was just born earlier in the month. While one child is born, another will be buried.
I cannot imagine the heartbreak.
So, I wanted to educate. Because Dwarfism Awareness Month is more than sweet stories about kids who struggle against some odds and make it out as successful doctors and business owners… it’s about the on-going battle for accessibility rights, equality in school and the workplace, and the need for more research so we can save the babies that need to be saved. It’s not about a cure… it’s about understanding. It’s being aware that people, all people, deserve to have options in healthcare and treatment.
Be aware, please. Educate yourself and others.
For more about Christian, or to help his family in this tragic time, please visit THIS website. Thank you.
May you have a blessed week, Reader.
love,
Thanks for educating me, I had no clue!
Thank you, for reading and learning with me!
martinkadelux recently posted…Marvelous Monday
I read about this and was so sad. How very sad to lose a 3 year old who probably suffered a lot in his life. What a beautiful child who fought to the very end.
His whole family… truly amazing and strong.
martinkadelux recently posted…Marvelous Monday
He wasn’t in any pain and the last 3 years of his life the was zero suffering. He was a happy child and changed our lives forever. His baby sister was born one week before he died. We are so grateful they got to meet. We miss him so much and there isn’t a second that goes by that he isn’t on my mind. He was a blessing. He was and will always be a miracle.
Oh this is so sad! I could never imagine burying a child let alone just giving birth weeks before. My heart goes out to them!!!
Jenn recently posted…Baby’s First Halloween Giveaway
It’s a truly difficult situation. My heart breaks for them.
martinkadelux recently posted…Marvelous Monday
I am sorry to hear about this, it’s always sad hearing about the passing of any child. The idea of awareness is great but for the most part I think people are aware of things. It’s what they choose to do with that awareness that is important. We as a society have to become compassionate, understanding, and accepting.
valmg @ Mom Knows It All recently posted…REVIEW – Little Tikes Big Dog Truck All-In-One Walker And Ride-On Toy
So true, Val. I sadly, didn’t realize that there were so many forms of dwarfism before Addie, and knowing quite a few children who have passed since her diagnosis… it’s heart-wrenching.
martinkadelux recently posted…Marvelous Monday
I had no idea that the condition could cause children to die too young. Thank you for explaining more about dwarfism and some of the complications of it.
Karen recently posted…POWER UP Halloween With Power Rangers SuperMegaforce Costumes
I didn’t know before Addie was diagnosed, either. Thank you for learning with us.
martinkadelux recently posted…Marvelous Monday
Thank you for educating us Michelle! We all need to live in this world learning how we can accept others and help make this world better.
Heather recently posted…Day 9 Of 30 Days Of Real
Amen, Heather!
martinkadelux recently posted…Marvelous Monday
How very, very sad. I feel so bad for the family. Thanks for reminding me that we should all educate ourselves on this subject.
Mistee Dawn recently posted…Best Buy has the full line of the newest Action Cameras! #GoProatBestBuy
Thank you, Mistee.
martinkadelux recently posted…Marvelous Monday
My heart is breaking for the family. Thank you so much for helping to educate us on this.
It is so hard, I appreciate you taking the time to educate yourself with me!
martinkadelux recently posted…Marvelous Monday
thank you for sharing, i learned a lot. praying for everyone.
Oh God! this is terrible 🙁 so sorry to loss baby Christian 🙁 Thank you also for educating us about this. It really means a lot.
Jessica Cassidy recently posted…Join me and the rest of my Street Team takeover at Hilary Wynne’s Facebook page tonight
Thank you for reading.