This Girl!!!!

Down Syndrome Awareness Month continues with this little angel. There are so many little ones that I would just love to share with you. This month I happened to only choose a few. I can hardly wait to share the rest of them with you. I have met some wonderful families on IG, that just so happen to be sharing and documenting their path with DS. It feels so good to have a virtual family that understands, supports and loves my family for all our differences and commonalities.

This little girl is nothing short of a miracle. She has been overcoming some serious challenges ever since the day she was born. From health concerns that she just made disappear, to being cognitively advanced for ANY child of her age, to being the best big sister to Cameron, and to being just about the sweetest, cutest little doll that there ever was. This girl is the whole package. She is breaking down stereotypes, paving the way for littles with DS. I am honoured that her mama, Lauren, shares her with us virtually.

We had our first Facetime date last week and plan on meeting up ASAP in Michigan. I can hardly wait to lay my eyes and my arms on this sweet girl and her family.

Meet Ellie.

Here is what her sweet mama has to say about her,

In a recent FB post, a friend and fellow Ds advocate asked her FB audience, "Ds mamas: We always talk about what we like about Ds, but what do you dislike?" My immediate response, "Nothing!" I truly do love everything about that extra chromosome.

As I sat and pondered my reply, however, I realized that what I dislike the most is the negative societal stigma attached to those two words - Down syndrome. Sadly, when most people think of Down syndrome, the thought of moderate to severe developmental delays and low cognition come to mind. Well, my friends, Ellie is living proof that, that stigma is old and outdated. Today during testing, her new therapists touted her as "brilliant," "amazing," and "remarkable," saying that she is "going to do huge things in life." Little do they know, she already has. She is the most incredible big sister, daughter, and friend. We still pinch ourselves in disbelief that she is ours. What a life she has ahead of her! As far as that stigma is concerned, Ellie continues to break down stereotypes, as do many individuals with Down syndrome. In addition to being cognitively advanced for her age, according to her IFSP/IEP testing, (After all, how many 2 years olds do you know that can nail first-grade reading comprehension questions; recite all of their letters, numbers, shapes, colors; and sight read more than 150 words?) the experts say that she has only a mild speech delay. Again we were encouraged to push full steam ahead with regards to full inclusion when it comes to preschool a year from now. Breaking down old stereotypes, smashing negative stigmas, and promoting both acceptance and inclusion of individuals who happen to be rocking an extra chromosome, that is what Ellie is all about. The sky is the limit and we couldn't be more proud of our amazing Ellie!

Ps. Her mom says that when she's wearing this outfit, she really does believe she is Cinderella.

Such a sweetheart!!! I am so SO SOOOOOOOOO proud of this little girl and her accomplishments.

Much love to Ellie and her wonderful family...xo

Group Hug Apparel

Do you have your Group Hug Apparel t-shirt yet?

It was such a pleasure to meet Andrew and his mom, Karen. They were selling t-shirts to raise money for a little girl in need of a heart transplant. Hazel instantly fell in love with Andrew. She immediately outstretched her arms to him and was trying to kiss him on the mouth. It was pretty cute.

Their booth was set up at Colasanti's, a local Tropical Garden. So we went out to get our Group Hug Apparel ON... (literally - we put it on while we were there).

Part of Andrew's inspiration to sell t-shirts is to help "sick kids." Andrew knows what it's like to have a heart surgery or two and wants to help kids in any way that he can. He says that it is "important to help people."

This video tells a little bit of their story, including a history of why they started Group Hug Apparel. Every time I watch the part where Karen says that she is proud of Andrew, tears well up in my eyes. It is an overwhelming feeling to know that your child can accomplish so much, even though the odds may seem stacked against them. You make us all proud, Andrew!!!

Also, if you have a Group Hug shirt and would like to send me a picture of you wearing it, I would love to post it on the blog. You can send it to chasinghazel27@gmail.com, with the subject line "Group Hug". Also, I know Andrew always wants to see where his shirts ended up. Feel free to jump over to his Facebook page and "like" it and share your pics with him.

Congratulations Andrew on all your accomplishments!!!

Click here if having trouble viewing 

Embracing difference is so empowering.

Acceptance & Peace...

Meet Ella...

I am honoured to introduce Ella!!!

I am also calling in the troops again as Ella will be having surgery at Sick Kids on September 13th. We need your prayers and positive energy to help this little angel get through some of the struggles ahead. I wholeheartedly believe that sharing Hazel's experience with you all was one of the best decisions we have made. Your constant and unconditional love and support for our baby while going through such a tough time was an insurmountable relief. Reading your thoughtful and encouraging comments nightly reminded us that there is something larger at work here and you are all a part of it. Ella needs you now and I know that she will be loved and encouraged just as Hazel was...THANK YOU!!!

Ella's mom heard about Hazel through a mutual friend and the nurses in the London NICU. Ella is facing some of the similar challenges that Hazel had to face at such a young age. She is another tiny fighter who is determined to beat the odds with a smile on her face. Here is her story...

Ella was born on March 22nd, 2012 at 36 weeks 4 days, weighing 4 lbs 15oz. She spent her first 4 weeks in the NICU where Hazel stayed. She was born with Down Syndrome and a heart condition called an AVSD. This heart condition is similar to the VSD that Hazel had. The challenge for Ella, like Hazel, is that she burns too many calories while she eats, which makes it difficult for her to gain weight. The challenge for her mommy and daddy is that they must feed her every 3 hours round the clock even though she is probably old enough to sleep through the night. As a parent who has gone through this exact situation, you do it gladly for your child because you know that is what is best for them, but you secretly pray for a solid night sleep. Although Ella is doing a fantastic job eating as much as she can, she is still not putting on enough weight. As a result she had to get an NG (feeding tube) until her surgery. She apparently doesn't like it and tries to pull it out all the time. Sound like anybody else you know?? Another feisty one...love it!!!

Ella is a VERY happy baby who enjoys playing on her play mat, having the occasional conversation with her toys and loves to be with people. She is impressing her parents and community daily by developing with flying colours despite her heart condition. According to the "Ages and Stages" developmental assessment for typical 4 month old children, Ella, when she was 4 months old, was in the normal to high range for social skills, fine motor, communication, and problem solving. She was in the mid range for gross motor, which is expected as she has low muscle tone and a heart condition. At a more recent appointment she impressed again. She chatted away and smiled at everyone, demonstrated her tummy time, rolling-over and fine motor skills. What an amazing little girl...great job Ella!!!

I think it is important to note that Ella's mom and dad knew about the challenges that Ella would face while she was growing in her mom's belly. They anxiously awaited the arrival of their little miracle, knowing she was a little different than other babies. Knowing she was going to need a little extra care and attention because of her heart condition. Embracing all that their daughter was going to offer them...and the offerings have been endless. She brings laughter, joy and tenacity to them everyday. Ella's parents encourage the education and advocacy of those with Down Syndrome or heart defects just as we do and are happy to be on the path to raising awareness and knowledge for all those with Trisomy 21.

Although we have not yet had the pleasure of meeting little Ella or her parents we are huge supporters of this family and one day hope that our little miracles will join hands and grow together. We will be praying for Ella and keeping everyone updated with her progress as she continues her fight and impresses all that she meets.

Good Luck Ella we will all be praying and sending positive energy your way as your surgery approaches....from your friend Hazel