Nika is a miracle baby from Haiti, currently living in America where she is receiving life saving medical care. She was born with hydranencephaly, meaning her cerebral hemispheres were absent at birth and were replaced with cerebrospinal fluid, leaving her with 0.5% total brain tissue. With only 3% chance to survive after birth and only 1% chance to survive until 12 months old, she has defied the odds in astounding ways, she is now a beautiful 4yr old, with a big personality and a huge testimony (you can read more about her miraculous story at (www.littlewarriornika.com).
She has grown so much in the last few years (praise GOD) that we are now quickly at the point where she can't continue rear facing in her carseat. This presents a challenge because sitting forward facing is not safe for her. This is due to the large circumference of her head, the weight of it, poor head control, and how her breathing can be compromised when not reclined as much as needed. When she turned 2yrs old, we started researching what the next step in seating would be for her as we anticipated this problem arising and we wanted to be a step ahead of it. So, at 3yrs old we purchased a new carseat with a higher weight limit to sit rear facing to delay the need to forward face, but now as she continues to grow, we are out of options.
After talking with her wheelchair and car seat specialists, therapists, medical equipment companies, etc, we have discovered that there is not a car seat on the market (special needs or not) that can accommodate her specific needs when forward facing. Because of the reasons mentioned above, the safest and only option for her is to be secured in her custom wheelchair and strapped in an accessible wheelchair van. We are always on the go for weekly therapy and doctor's appointments as we continue to work to enhance her quality of life, making this big purchase even more necessary for us.
We've been searching for affordable options and the truth is, they just really aren't that affordable. That's why we need your help. We've done a lot of research and have found a few used van options at GREAT prices (typically a conversion van can cost anywhere from $40,000-$75,000+)... These do not have any bells and whistles, but will last many years to come, be reliable, and meet her needs for a safe mode of transport.
We have exhausted grants and assistance options; some we didn't qualify for for various reasons, others we were told no, and several I'm still waiting on an answer from. We are also currently setting up mini photo shoot sessions (Stephen + Sarah Photography) for donations as well as making various items to sell, with 100% of the proceeds going towards Nika's van fund. We will update Nika's Facebook and Instagram when those ways to support are available.
If you'd rather send a check, you can make it out to 'Sarah Conque' and mail to:
Po Box 1172
We are grateful for any amount that will help meet our goal to keep Nika as mobile, independent, and SAFE as possible. God Bless!