TLDR: A brief summary, I have two special needs children, as of right now only one has mobility issues and utilizes a medical stroller as a wheelchair. It is getting harder to lift Gavin as he is getting bigger and he is full assist. It has been hard receiving this news that both of my kids have two different genetic conditions. For more information on my kids, please read below.

Hello Everyone,

For quite some time, I have been considering starting a GoFundMe campaign to purchase a handicap-accessible van. I wanted to make sure that I had all the information I needed before making a decision, but I found that most places require you to have a vehicle that can be converted, such as a minivan, and then pay for the conversion out of pocket before submitting a reimbursement request. This can be a very expensive process, with the cost of a vehicle conversion easily reaching $30,000. Although we have been managing with our current vehicle, Gavin is growing, and it is becoming more challenging to lift him in and out of it. I am hoping that a GoFundMe campaign will help us to purchase a van that is more suitable for Gavin's and possibly Kayleigh’s needs.

A summary of Gavin's medical adventure:

Gavin has been diagnosed with a rare microdeletion on his 8th chromosome (8q13.2). The gene sequence is called PREX2, and according to his geneticist, there are only nine other people in the world who have this microdeletion. However, Gavin's microdeletion is unique in that it is mosaic and de novo, meaning it only appears in some of his cells and was not inherited from either of his parents. This makes Gavin the only person in the world with this microdeletion that manifests in this way. Unfortunately, this diagnosis has come with global developmental delays, epilepsy, hypotonia, cortical visual impairment, and a range of other diagnoses. At this time, the prognosis of his microdeletion is unknown, but we remain hopeful for a positive outcome.

Now, let me tell you a little about my youngest child, Kayleigh. Kayleigh was born prematurely at 36 weeks, and was admitted to the NICU to be tested due to some of her facial and bodily characteristics being abnormal. After further investigation, we discovered that Kayleigh has only one kidney, and has Kabuki Syndrome, a genetic condition. We are hopeful that Kayleigh will be healthy and happy, no matter the outcome. Kayleigh's recent diagnosis of Kabuki Syndrome has given us some clarity towards different medical issues we have noticed. Some of these medical issues are VSD (small holes in her heart), tethered spinal cord, a possible submucus cleft palate, and hearing impairment.

Google provides a summary saying that Kabuki syndrome is a rare congenital disorder that affects one in every 32,000 births. It is present at birth and has an equal impact on both men and women. Those with Kabuki syndrome typically have distinct facial features, mild to moderate mental impairment, and growth issues. Additionally, it can also affect the heart, intestines, kidneys, and skeleton. We hope this information helps provide a better understanding of this rare disorder.

As a parent, it can be incredibly challenging to face having two special needs children. It is even more difficult to manage their appointments and other needs while being unable to work. I am hesitant to ask for help, but I am in need of assistance in order to save up for a purchase that would benefit both of my children. I am humbly requesting any advice, or kind words if money is not an option. I understand that this is a big ask, but I am grateful for any help that can be given. Thank you for taking the time to read this.