Our wonderful and hectic story began when your youngest daughter Skylar was born. We knew that
something was going on with her heart before she was born. Months of weekly fetal scans and bed rest
had shown an abnormality however, doctors were not quite sure what yet. At 35 weeks gestational the
doctors decided Skylar needed to be born to start receiving the care she needed. She was immediately
whisked away to the NICU to be stabilized. Only 2 hours later she was loaded up to be air flighted to
Egleston Children’s Hospital. Once at Egleston in the Cardiac Intensive Care Unit (CICU) she was
evaluated by a special team of cardiac doctors. Those doctors diagnosed her with dilated
cardiomyopathy which meant her heart was too large and too weak to pump itself. A heart defect such
as this causes many other issues. Skylar needed a breathing machine to provide her with enough
oxygen. A feeding tube was placed to provide nutrients along with IV nutrition. She was placed on IV
medications to help pump her heart.
We were also told to have our older daughter Jolene’s heart check as well. Jolene was always on the
smaller side, had eating struggles and was behind in her growing milestone. Jolene’s pediatricians had
noticed that she was behind but felt that she would slowly catch up. After the suggestion of Skylar’s
doctors we had an echo of Jolene’s heart. The echo showed that she too had a heart defect;
Hypertrophic Cardiomyopathy. Hypertrophic Cardiomyopathy is a defect in which the heart muscle is to
thick. Like any muscle when it is working very hard it thickens however, this is not a quality not wanted
in a heart. When the heart muscle is too thick it can cause stiffening, blockage or arrhythmias.
With both girls having heart defects the doctors at Children’s teamed up with genetic specialist at Emory
begin searching for a reason. After several negative tests we did a full chromosome dna test, included
both parents. Results came back that both the girls have a rare genetic deletion ALPK3.
Brenda Ridley donated $2,500.00June 7, 2021, 4:48 pm
ANONYMOUS donated $$$June 7, 2021, 4:31 pm
ANONYMOUS donated $100.00June 7, 2021, 2:45 pm
ANONYMOUS donated $100.00June 7, 2021, 9:59 am
Your brothers and sisters in Christ stand with you. Praying for you God’s strength and peace and your daughter’s healing and grace for you and your family.
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God bless this family!
God Bless
Your brothers and sisters in Christ stand with you. Praying for you God’s strength and peace and your daughter’s healing and grace for you and your family.
Love you guys! You are ALWAYS in our prayers.
Prayers for you & your family
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