The Stephens Family and Lillian's Journey
Donation protected
Tariea and Julian Stephens have 3 beautiful children - Gabriella (5), Elijah (4), and Lillian (1). The Stephens family have a long and tough road ahead as they assist Lillian with her upcoming medical journey. Tariea has given up her career to provide care for Lillian and her complex medical needs (see below). When Tariea takes Lillian to appointments, treatments, surgeries, and hospitalizations, Julian will need to take many days off to care for Gabriella and Elijah. In addition, COVID has made things even more difficult for them as many hospital visitor restrictions are now in place. This fundraiser was created to help the family financially though this time so that they can focus on what is most important - quality time with each other and Lillian's needs as she tackles her journey. Our goal is for the Stephens family to get through the next stages in this journey without having to worry about paying bills, buying groceries/gas, or getting Lillian and her siblings anything they may need. This is such a beautiful and caring family that has done so much for others in need in the community and we would love to show them the same gratitude in return.
A little about sweet Lillian from Tariea.
When I was pregnant with Lillian, I was extremely sick all throughout. At 37 weeks, they decided to go ahead and take Lillian, because she was more safe out than she was in. We knew at birth that Nationwide Children's hospital would be waiting to fly her out for immediate surgeries. During delivery, I lost too much blood resulting in an emergency hysterectomy. After doing genetic testing on Lillian after birth, she was diagnosed with Fanconi anemia and VACTERL. Fanconi meant that, at some point, she would experience bone marrow failure along with other complex conditions including:
- Lillian is deaf because she has no openings to her ear.
- She was born with no bones in her thumbs so she's not able to use them.
- One kidney has 0 function.
- She has ASD in her heart which we are watching in the top chamber of her heart.
- She is missing her radial bone in her left arm.
- And, at some point, she will have complete reconstruction of her anus and private area.
- She has a g tube, because she experiences a lot of issues with her esophagus and had a blockage in her small and large intestines when she was born -- so she's had multiple surgeries in both areas.
BUT she is the strongest little girl I know.
Lillian is now 21 months old and weighs only 13 pounds (due to the Fanconi) and has had more than 20 surgeries. In the past few weeks, Lillian's labs have continued to decline -- which is an indication of her bone marrow failing. Normally, they predict this won't happen until age 5, but I've learned Lillian likes to write her own story. That means there will be a lot more appointments and hospitalizations as we prepare for a two-week admittance. We do keep our faith and know that God has a plan for Lillian, but this upcoming journey will not be easy.
A little about sweet Lillian from Tariea.
When I was pregnant with Lillian, I was extremely sick all throughout. At 37 weeks, they decided to go ahead and take Lillian, because she was more safe out than she was in. We knew at birth that Nationwide Children's hospital would be waiting to fly her out for immediate surgeries. During delivery, I lost too much blood resulting in an emergency hysterectomy. After doing genetic testing on Lillian after birth, she was diagnosed with Fanconi anemia and VACTERL. Fanconi meant that, at some point, she would experience bone marrow failure along with other complex conditions including:
- Lillian is deaf because she has no openings to her ear.
- She was born with no bones in her thumbs so she's not able to use them.
- One kidney has 0 function.
- She has ASD in her heart which we are watching in the top chamber of her heart.
- She is missing her radial bone in her left arm.
- And, at some point, she will have complete reconstruction of her anus and private area.
- She has a g tube, because she experiences a lot of issues with her esophagus and had a blockage in her small and large intestines when she was born -- so she's had multiple surgeries in both areas.
BUT she is the strongest little girl I know.
Lillian is now 21 months old and weighs only 13 pounds (due to the Fanconi) and has had more than 20 surgeries. In the past few weeks, Lillian's labs have continued to decline -- which is an indication of her bone marrow failing. Normally, they predict this won't happen until age 5, but I've learned Lillian likes to write her own story. That means there will be a lot more appointments and hospitalizations as we prepare for a two-week admittance. We do keep our faith and know that God has a plan for Lillian, but this upcoming journey will not be easy.
Organizer and beneficiary
Leslie White
Organizer
Circleville, OH
Tariea Stephens
Beneficiary
