Neely's Song
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(See the Tip below.) Please check out the Facebook link below to see Neely's song. Copy and paste
Neely update: This beautiful, strong, loving child is being discharged to the Ronald McDonald house. Mom and Neely will be in Omaha a few more months with visits from Dad and siblings as often as they can make the trip.
Neely Jacqueline Claire Lucquete is an incredible 11-year-old in need of a multi-visceral transplant. She was born with Hirschsprung Disease, sometimes referred to as Short Bowel Syndrome. She and her family are preparing for five (5) organ donations: small intestine, colon, liver, pancreas, and kidney. She is upgraded to a 1B status, which means she is at the top of the list. The family, dad Josh, mom Kathleen (Kat), sisters Laney and Eilley and brother Renner are together in Omaha. Neely gave a thumbs-up in the picture below while boarding the medical flight there.
Bills don't stop, expenses increase while the family is displaced. They still make house payments, utilities, gas, food, lodging, medical supplies, car payments, insurance, and the general running of a 6-person household with 2 dogs. Thankfully Uncle Jack, Kat's brother can stay at their home and care for the dogs. The family misses them dearly. Kat can work remotely and Josh will be on leave.
This is all so sudden, her change in health status with no time to plan for packing. Neely has been doing so well. Yes, she is on total parenteral nutrition, (TPN), colostomy care, a port, regular labs, around-the-clock medication, backup batteries, generators and so on. Their home has stashes of medical supplies everywhere.
All funds will go directly to the Lucquete family to pay the expenses listed above. The ones that don't go away just because you do. Your generosity so far has been life-changing and the family is beyond grateful. Thank you.
Tip: When you donate, look at the bar below and slide the bar to the left to zero not leave a GFM tip, it's not for the family.
Below are some family photos I was able to gather. No videos unless I post on YouTube and I don't.
Neely after a couple of days settled in.
Neely giving thumbs up while boarding Ambulance Plane to Omaha, sorry about the poor quality.
Neely when her song began...
Neely and Mom, Kat (Kat, mother of four, amazing)
Neely and Uncle Jack
Neely, Eilley, Laney and Renner
Uncle JD, Grandma in the background with Neely, Wonder Girl!
Kat, Laney, and Josh in the back, Eilley, Grandma, Neely and Renner
Neely, Laney, Renner and Eilley, beautiful family
The girl's day out! Neely, Laney, Kat, and Eilley
