The Nezzie Fund

Hello Family and Friends.

My name is LeKisha and my husbands name is Brandon and we are the parents to our very handsome son Riyu. As most of you know Riyu was born with a very rare but serious condition. The condition is called Harlequin Ichthyosis and mainly effects the skin. The condition causes Riyu to not produce a certain protein and also causes his skin to grow 10x as fast as normal. The missing protein is a substance that holds the first and second layer of skin together. Without this protein, Riyu's skin continuously sheds off. With the skin growth, his skin grows and sheds off 24-7. Our skin is extremely important when it comes to balancing our temperature. Normally when we are hot, our bodies begin to sweat to cool us down, but Riyu is unable to do so. The condition causes his sweat glands to become clogged and stops Riyu from sweating to be able to cool off. He is at risk for overheating and it can become dangerous if we don't manually cool him down. Another thing that Harlequin effects is his metabolism. Due to the constant 24-7 skin growth, Riyu has a very high metabolism. He is on a very high caloric regimen. We were maintaining his appetite with formula that has been increased in calories and also with baby food puree. But all of a sudden Riyu has had constant vomiting and seems to choke and gag on any and everything, so we have halted all purees and he is strictly formula. Since Riyu's appetite is being maintained with only formula he goes thru formula like no other. He is on similac alimentum and 1 can makes 17- bottles at an increased calorie of 24 cals per oz (more powder less water). Riyu averages 12 to 13 bottles per day meaning one can lasts about a day and a half. This last month we had issues with the insurance company and they only approved part of his supply. He was only given 10 cans and we were out of that on the 13th. We tried everything we could to get the insurance to cover those other 12 cans but were unsuccessful and ended up having to purchase formula out of pocket. We finally got approval and his insurance company shipped the remaining cans but in that time frame we had spent close to $250 on formula.

We are also in the process of moving to Snowflake to get Riyu out of Phoenix before it starts to heat up. We had hoped to find a place close to the end of our lease and to transition smoothly but unfortunately one of the only places we found in Snowflake could not wait till April so we signed our lease a month and a half early. We've been paying double rent and double utilities for the past month.

We have hit a financial crisis and are asking for help. Some may not know but Riyu was actually born to a family member and we are in the final stages of our adoption. We have reached out to our lawyer and hope to have this finalized in the coming weeks. Since we've only had MPOA, we can't do much when it comes to insurance or applying for assistance. Both Brandon and I have always been financially stable and would do what we could to make ends meet, but due to the unfortunate timing of the move and a few other things that came up in 2019 we have exhausted all our funds. The incident with the formula was unplanned and took alot from our moving expense. We are asking for just a little help to get us over this hump. We would be forever grateful for any help recieved. If unable to help we would still be grateful for prayers and positive energy for our little guy and his newest symptom of vomiting constantly. We were able to see his pediatrician and she has ordered up some tests. Our biggest concern is a stricture. He has a high risk of developing them due to all the abdomen surgeries.  Once again thank you for all the love and support thus far. Love you guys all!