When Kassidy was just 3 years old, we found a small lump on her groin. She was diagnosed with a rare condition called Lymphangioma. https://en.wikipedia.org/wiki/Lymphangioma
Lymphangioma is a malformation of the lymphatic system which develops in the womb and they don't know how or why. Over the years we have worked a team of specialists at the Children's Hospital of Richmond to determine an appropriate treatment. Recently, in January, we discovered not only does she have a large area of the groin and abdomen which are affected, she also has the lymphatic cysts throughout her kidneys, liver, spleen and bone. The new diagnosis was "Lymphangiomatosis". https://www.lgdalliance.org/patient-professional-resources/what-is-lymphangiomatosis/
The hope was the lymphangiomas would shrink on their own, however, as she is growing, so are the cysts. Kassidy is the only patient of her kind here in Richmond. With support of her doctors, we have submitted her case to Boston Children's Hospital. They are the best hospital in the country when it comes to lymphatic malformations. The registry across 6 continents with patients like Kassidy is only about 200. There is not a lot of research on her condition because it's so rare, which makes treating it a very individualized process. Her new diagnosis is CCLA - Central Conducting Lymphatic Anomaly. So, we are on the search for the best treatment for Kassidy.
Over the past year, we have been in and out of doctors offices and have had numerous hospital visits for MRI's, blood draws, genetics doctors, ultrasounds, GI doctors, X-rays, Oncologists and Clinics with our team. We are now preparing to go to Boston in December for a four day visit to Boston Children's Hospital. It has taken since January to get our visit.
We tell Kassidy how special she is and how God made her this way for a reason. She prays for other children and holds God close to her heart. She wants to be a doctor one day, so "she can help people". She is a genuine soul with nothing but love in her heart and I truly believe God did give this to her to help people. My hope is maybe one day other children will have better answers from the research and treatment Kassidy receives.
We have three active children, 12, 7 and 6, and thank God everyday Kassidy is not worse. Her birthday is in December along with Christmas, so it will be a busy, and expensive month.
The funds raised here will help to cover overdue medical bills, transportation to Boston, lodging, medical expenses from the numerous visits, doctors, hospital stay and tests Kassidy will have to go through up there and in the future back at home. We have been doing our best to handle this independently. It was suggested to me by a friend to post her story and reach out for help. She offered to post this for us, but I felt I should tell her story. This is a humbling experience.
We pray for your family if you need a prayer and will pay it forward when we can.
Thank you for helping.
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