Travel to Mayo Clinic

Leilani (Leila) started to have problems with her hands and feet 6 months ago. Initially we didn’t think it was a big deal maybe one or two ER visits but we never thought we would 20 plus ER visits deep with a rare conditions called Erythromelgia and Fabry’s! We have been recommended to Mayo but can’t get in again until late Aug!

We now know she might not be returning to school or actives. Our prayer is that we can find a doctor to support her conditions. These conditions are genetic and what we have learned is that it’s becoming very expensive very fast.

We have had good health care until my (Kyndryl) employer recently decided that they will be letting me go once I returned from short term disability! So our new obstacle is figuring out how to pay medical bills while supporting our family. Most importantly getting Leilani the care she desperately needs. Which includes a lot of medications that are not covered by insurance.

Leilani had what we believe to be a stroke on July 3rd. She could not talk or use any muscles for at least a hour almost 2. This was scary for all of us! Our daughter is suffering and it’s not okay!!

If you know our family then you know we have She doesn’t deserve this nor does she deserve not being able to stay awake at school or do any sports at all! If you can’t donate please just pray!

We have seen many specialists and doctors but they have now referred her to The Mayo Clinic where they will be able to support her diagnosis of Fabry (they added this one back on) and Erythromelgia.

On top of having to leave sports she has also had to become a Homebound student but Columbia doesn’t have teachers for it ‍♀️ because her medications are so strong for her to function at school. I was hopeful that she would get this figured out by summer but it’s still looking rough at the current time.

Leilani is losing her strength as well as her ability to take part in any activities. This is taking a toll on her mental health as well as physically health. She is in pain everyday and is on high doses of Gabapentin 1800mg and other medications from 0 to 15 medications daily. This is what makes it hard for her to function. We are trying to find away to restore our Childs quality of life as well as develop a treatment plan to get her back to living a regular 14 year olds life.

I never thought I would have a daughter becoming handicap at 14 year old but those are the cards we have been handed!

I have faith that we will make it back to having good health or at least a more stable health.

Please Donate if you can but if not please just pray for us! Every little bit helps and thank you in advance!

These funds will be used for us to travel to and from hospitals, paying some of the hospital bills and managing her care due to he rare conditions being so rare!