Help Sarah Get a Wheelchair Lift

Our sweet Sarah Nicole came to us 6 1/2 weeks earlier than we expected on Christmas Eve, 2009. They knew that something was wrong, more than the cleft lip and palate that we knew about. So, they did genetic testing and Sarah has a rare genetic condition called Chromosome 18 Deletion Syndrome (Distal 18q-). She is also missing the gene TCF4 which causes Pitt-Hopkins Syndrome.


Sarah has developmental and intellectual disabilities, along with other medical issues. Sarah has had 13 surgeries, including open heart surgery at 6 months old and 4 brain surgeries. In the first 2 years of her life, Sarah spent around 14 months overall in the hospital. She didn't even come home for the first time until she was 5 1/2 months old. Her older brothers didn't even get to see or meet her for the first 5 months. It was a long road, but Sarah smiled and brought joy to everyone through it all.



Sarah has been doing much better medically since March, 2012. She had gone just over a year with no hospitalizations. Then she had grand mal seizures that put her back in the hospital again. Thankfully it was only for a long weekend. Much better than her last stay of four months from November, 2011 to March, 2012. We are very thankful that she is doing so much better.


She still has her challenges though. She still has a trach and is fed through a G-J tube. She is fed in her intestines which means that she is attached to a feeding pump 21 hours per day. Sarah is unable to sit on her own, roll over and has poor head control. She still maintains that smile and has a giggle that would melt anyone's heart.


We have finally been able to get a van that accomodates Sarah, her two older brothers and a caregiver seat next to Sarah.  We are so blessed to have this van and we are so thankful.  We are so close to being able to get a wheelchair lift for the van.  Sarah is getting bigger, it feels like by the day and she is quickly outgrowing her carseat.  We need to get a lift for her and for our poor backs.  We have been given a grant by Braun to help with the lift and to get this money, the lift has to be installed by October 16th.  We are only about $2,000 short now and could really use your help so that we don't lose this grant.  

Thank you for reading our story. We would appreciate prayers for Sarah's continued healing and we will be honored and grateful for any amount that you donate. Please share this with as many people as you can. We need your help with donations and spreading the word. Thank you so much.