I am Breanna’s mom and creating this for her and Tony for the care of my sweet granddaughter Lainey. We didn’t think Breanna could have kids, so when we found out about Lainey, we were all so overjoyed.

At her anatomy scan, they were told there was an issue with Lainey’s legs, but everything else looked okay and that she would be outpatient care to fix her legs and she would go home when Breanna did. But that wasn’t the case. When Lainey was born, the extent of her legs was worse than what was known, and her breathing was not great, so she was taken to the NICU before Breanna was even awake from surgery. That is where Lainey stayed for exactly 6 weeks, during which Breanna and Tony either stayed in hotels or made the 4-hour round trip to be with her until she was discharged.

In those 6 weeks, we found out Lainey has the diagnosis of two genetic disorders: one is CDKL5, and one is an X chromosome deletion, which causes her hips and legs to be how they are. CDKL5 is a 1 in 40,000 case, but because of the chromosome deletion, Lainey’s condition is even more rare. The genetics counselor said she’s never seen both in one child. Lainey had to have a GJ tube placed at 4 weeks old because she was born with a cleft palate, so she cannot feed from a bottle without aspirating and cannot tolerate food in her stomach. She is on oxygen, a pulse ox machine, a feeding tube, and a suction machine. Insurance will only cover so many supplies monthly, leaving Tony to pay out of pocket for everything else needed. She had weekly cast changes for 6 weeks until ortho determined that was no longer working and they now have an appointment in March to discuss surgery on her hips and legs which will result in more hospital time.

Lainey’s doctor told Breanna that with the care Lainey needs, putting her in any daycare would not be beneficial to Lainey and that Breanna would need to become a stay-at-home mom. Lainey has several specialty doctors that she has to see monthly in Morgantown, so that expense will add up. She already has 5 appointments in March scheduled. At some point, she will have care established in Cleveland at the Cleveland Clinic because they specialize in CDKL5, which is the disorder that can cause her to have uncontrollable seizures.

She is the most precious little baby we could have ever asked for; she just has some challenges in life that are going to cost a good amount of money, so any and all help for Breanna and Tony to ease the burden is appreciated.