Support Kiran's Journey Toward Mobility

As many seeing this know, my son, Kiran, was born with a rare genetic disorder that is currently being studied. In the most previous research, there are 14 others worldwide with misspellings close to the same gene location as his. Consistent with the research on this disorder, Kiran lives with intellectual disability, vision issues, motor difficulties, and is non-speaking. Because he loves to be unique, he is also currently the only known child with this condition that presents with heart defects, although it has been seen in mice with this gene mutation.

Kiran is a wheelchair and assisted gait trainer user, who is able to help minimally with transitions between his mobility equipment, changing table, furniture, into a vehicle, etc. Now that he is eight years old and hovering right around 50 lbs., we realized this year that it is time to move forward with a wheelchair accessible vehicle for him.

Our family has been so privileged and blessed up until this point, to be able to move forward and provide Kiran with all of the extras he needs to successfully navigate the world with comfort and dignity. We have done this with the help of his waiver, an amazing local organization called Children at Home, the generosity of family, and through lasagna and shirt fundraisers. We have been and continue to be so thankful for all this support; Kiran's quality of life has benefitted greatly having an accessible home. We were shocked when we found out, in February of this year, that modifying our van for his transportation needs would cost almost as much as the van did brand new! We also learned that due to the year and mileage of our vehicle, we have to move forward quickly, or the modification companies will no longer touch it.

It would be a tremendous blessing to our family if Kiran's community could come alongside us and help with this endeavor. This is an uncomfortable ask and one that has taken many weeks of thought and prayer for me to act on. We humbly ask that you do not give out of any feeling of obligation, and please do not give unless you are already meeting your own needs and desired quality of life.

My mantra for life with Kiran, for many years, has been: It's a long road ahead, but we journey together. This is a part of our journey, and we are so thankful for whatever way you choose to journey with us. Every gift, every share, every thought, and every prayer adds up and blesses us immensely.