There is no greater agony than bearing an untold story inside you.
Every parent understands how children bring a family together, giving us focus, creating purpose and shaping our priorities. Children with greater needs can create even greater bonds, not just within single households, but across entire communities, creating “families” bound together through similar experiences. These families help each other, both with practical knowledge and emotional support. Sometimes, just knowing that you are not alone can be the greatest encouragement. Here are some stories shared by families in our community.
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Gwen is a sweet and sassy 3.5-year-old little girl who has the greatest belly laugh you’ll ever hear. Her journey with health complications began when she wasn’t even a month old. For more than four months, Gwen was seen by many different specialists at another hospital without answers. Finally, Gwen’s parents, Erin and Mark were referred to St. Louis Children’s Hospital. Gwen’s family is so thankful for Children’s. Their experience was like night and day. Almost immediately, Gwen had a brain MRI and was referred to Neurology. Soon after, she was referred to Dr. Liu Lin Thio. To this day, Gwen still has no clear diagnosis, but her doctors know she has epilepsy, a brain disease, and microcephaly, a condition … Continue reading Gwen’s Story
After a seemingly perfect pregnancy, Henley was delivered via an emergency c-section and born with a condition called Hydrops Fetalis, which is an accumulation of fluid in two or more fetal cavities. She was immediately transferred to St. Louis Children’s Hospital. In the first few days, doctors told us that she probably wasn’t coming home with us. She made a fast turnaround, and, after just 22 days in the NICU, we took her home. However, she had a catastrophic brain injury. Ultimately in her short two years on earth (two years, one month, and 12 days to be exact), Henley faced many complicated diagnoses that no amount of therapy sessions or medications could improve. Henley liked taking walks and taking … Continue reading Henley’s Story
Our daughter, Cameron Elyse Squires, was born on 1.12.09, with a rare 2p chromosomal deletion – only 2% in the world! She received an 8-hour life-saving surgery on 4.8.09, with several to follow through ‘12. Cameron and her health needs are managed through a team of exceptional doctors at Our Family Healthcare + St. Louis Children’s Hospital, for whom we are ever so grateful! Despite having intractable, myoclonic epilepsy, being trach – and g-tube dependent, without mobility, speech or vision, she shows us how very strong, resilient and HAPPY she is every single day! If that doesn’t portray what determination + strength really are, I am unsure what can! She is thriving in 3rd grade at Southview – making progress … Continue reading Cam’s Story
December 3, 2007 – October 17, 2011 My pregnancy with Jalen was picture perfect and my 20 week ultrasound was fine. At 38 weeks the doctor thought Jalen might be getting too big and scheduled an ultrasound. The ultrasound showed minimal amniotic fluid and low fetal heart tones. We were sent to the hospital to have a cesarean section and at 8:06 PM on December 3, 2007 Jalen was born. We knew something was wrong immediately after he was born because he didn′t cry and he wasn′t breathing correctly. He was rushed to the NICU for further testing. An MRI showed that Jalen′s brain was lacking white matter and his brain stem was significantly smaller than it should be. We … Continue reading Jalen Amari Julian Scott