Help Lorelei Battle Congenital Nephrotic Syndrome

Update: Hi everyone, Sierra here. (friend of the Nottingham family). I wanted first to thank everyone who donated and shared. Second, I  wanted to update you all with some very regrettable news. 

There’s no easy way to say any of this, but LeiLei’s genetic test came back with “worst-case scenario” results. In what I can only imagine must feel like a walking nightmare, LeiLei has  been diagnosed with Congenital Nephrotic Syndrome (CNS.) She is to start on routine dialysis and will eventually need a kidney transplant.  The exact time and date that her kidneys will fail is currently unknown; most children with LeiLei’s condition (usually) require a lifesaving transplant before or by their 6th birthday. The Nottingham’s lives have been turned upside down, but they are trying to remain strong. LeiLei will need to travel to Shands monthly (at a minimum), and the family will have to be on a constant lookout for signs of kidney failure; as they wait for the best time to perform the transplant. For the reasons and more, I have opened the GoFundMe back up and increased the funding. From my heart, I want to again thank everyone who has already donated. This fund has  been a lifesaver for Nottingham’s. With that said, please consider donating again, (or perhaps even making a monthly donation.) I plan to keep this fund open and adjust the fundraising amounts as the needed. (Even with insurance, the cost for yearly dialysis, medication, and travel expenses will be astronomical.) Together we can help the  Nottingham’s help Leilei in her battle against CNS.

Hi, my name is Sierra, and I am a friend of the Nottingham family. As many of you may (or may not be aware,) Colleen and Alex's little girl Lorelei is currently in and out of Shands Hospital battling Kidney disease. Lorelei (or "LeiLei" as I like to call her) has a condition caused by her poorly functioning kidneys called "Minimal Change Disease," or MCD. MCD has created the state LeiLei is currently in, where her body cannot maintain its necessary proteins. This lack of protein causes LeiLei to be weak and have intense allergic reactions. These reactions can be fatal and often require protein transfusions.

MCD can usually be cured with a three months treatment of steroids. For the Nottighmans, that means over 12 weeks of trips from Tallahassee to Gainesville and back. The frequency and length of these trips could be anything from day trips to trips that span several days. However, it seems likely that LeiLei is part of the 20% of children whose MCD is much more challenging to cure. There is a good chance that LeiLei has a version of Kidney Disease that is steroid-resistant. If her Kidney disease is indeed steroid-resistant, LeiLei will require even more medical assistance and many more tips to Shands.

Shands only allows one parent in the hospital room at a time (COVID.) Colleen and Alex trade shifts while the other waits in the lobby. On top of that, Shands ends all visiting hours at 10 pm every night. Colleen and Alex cannot stay the night with LeiLei and must book hotel rooms instead. (The cost of which doing has been adding up.) In the last month alone, the Nottingham family has made the trek from Tallahassee to Gainesville (for treatment at Shands hospital) three times. Even if LeiLei can take the steroids, the family expects to be traveling back and forth for at least the next three months; (they face many more trips if Leilei's Disease is steroid-resistant.)

The Nottingham's were able to receive help from relatives for the hotel costs this last trip but cannot keep asking family because who knows how long this could go on. The day-to-day living costs combined with the COVID related heightened travel costs are a real burden to the Nottingham family. Just on their last journey alone, the Nottinghams had to shell out over 1,000, and the Trips will only continue to increase. Donations to this Gofundme will help lift the burden and the financial strain off of Nottingham. The funds will allow Colleen and Alex to take unpaid leave without the worry of finical hardship. Although Colleen and Alex have sick days, their sick days are numbered (and given the number of trips, LeiLei will require, it could outnumber the families' paid leave.) The family is already missing out on five days of sick leave because LeiLei is also fighting COVID and will need one caregiver to stay with her.

These funds will allow Alex and Colleen to take unpaid leave without undue stress or financial burden. Please consider joining me in donating whatever you can to provide a safety net to the Nottingham family. Together we can easily give Colleen, Alex, Dexter, and little Lorelei comfort during this turbulent time.