Music and Movement Win for Down Syndrome Awareness!
This year we are excited to introduce you to the Egan Family!
Did you know that approximately half of all infants born with Down syndrome have a heart defect? (source) Having a heart surgery at any age is a scary experience for any parent! These “heart warrior” parents are strong beyond imagination!
Little Gwendolyn is 9 months old and already has 2 open heart surgeries under her belt, with another one looming in the not too distant future. You will find her laughing and smiling and enjoying each moment of every day though!
Featuring a Tiny Warrior with Down Syndrome
The Egan’s 9-month-old daughter, Gwendolyn might struggle to weigh in at 10 pounds but her smile, strength, and determination are mighty! Gwendolyn Egan is an overcomer that will inspire you.
Little Gwendolyn has had 2 heart surgeries already and her Doctors are trying to buy her as much time as possible so she can grow stronger before her next surgery, which will require the whole family to go to Boston for a more specialized medical team. Little Gwen has been at home healing after the 2 surgeries where she ended up spending two months in the hospital!
What’s the best part of being back at home?
The best part is how well she slept her first night back in her own crib. In the hospital, she was waking up regularly between 3am and 7am to fuss. But last night, she slept mostly without a peep and didn’t even wake up until 8am! I didn’t even realize, until last night, how deeply impacted her rest and development must have been by the constant noise and interruptions in her hospital room, even at night.
Says her mom, Jessica
Most of us can only imagine having our child in the hospital for two months at a time. From the emotional roller-coaster of fear, worry, and then elation at the smallest bit of progress; to the sleepless nights and obstacles of meeting everyday living needs. The hurdles of everyday living are frequent, cumbersome, and draining.
Hard doesn’t even begin to describe it.
Think about it. Almost any parent who gets a diagnosis of Down syndrome for their little one goes through a torrential flood of scary feelings.
Most of us would describe it as a very dark time. It is not the future we had planned for our little one and many times we don’t know the possibilities or joys that a person with this diagnosis will have. Dealing with health issues in so short a time span could be crippling! However, time and time again I see strength, determination, and joyfulness displayed in these amazing families!
Some of the health concerns for people with Down syndrome are:
- Heart defects (47% of all babies with Down syndrome are born with a heart defect)
- Leukemia (10 to 20 fold risk)
- Thyroid (Thyroid disorders are more prevalent among individuals with Down syndrome)
- Hearing (Up to 80% of children with Down syndrome experience hearing loss, sometimes severe)
- Vision (People with Down syndrome are more likely to experience vision disorders such as short-sightedness, long-sightedness, and astigmatism)
- Sleep Problems (Studies have reported a high incidence of sleep disturbance among children and adolescents with Down syndrome)
Likewise, the Egans show amazing strength and their giving spirit is inspiring! On any given day you will see them pointing to other’s need and trying to help those around them! Jessica is always focused on the positive and her Instagram page about Gwendolyn is always a bright, cheery spot! She chooses to highlight Gwen’s strength and determination and the everyday blessings of life along with celebrating BIG each tiny victory!
Movement Props for Down Syndrome Awareness
Because of Gwendolyn’s surmounting medical bills and the financial hardship of having to go so far for surgery and extended hospital stays Bear Paw Creek would like to do a small part to help out!
We are excited to announce that 10% of all Bear Paw Creeks profits for the month of October will go toward the Egan family in honor of Down Syndrome Awareness Month
What Can YOU Do for Down Syndrome Awareness Month?
#1 Just go ahead and make your purchases as usual! Treat your little one to some Bean Bags Scarves or Streamers! If you are a teacher or coop leader now is the time to purchase that Stretchy Band you’ve been eyeing! Then go about your life knowing 10% of that purchase went to this sweet, tiny warrior. Really, it’s that simple. We’ve got your back!
#2 Keep an eye out on Bear Paw Creek’s Instagram account for an Awesome Giveaway!
#3 Follow Our Sweet Gwendolyn on Instagram for more inspiration and an overload of cuteness!
#4 Share with your friends!
#5 Visit Jessica’s Website Our Sweet Gwendolyn to connect further