We are fundraising to purchase a wheelchair-accessible van for Farrah.

The total cost of the vehicle is a little over $82,000. Yeah, we were shocked by that also. The modifications to properly allow for wheelchair access and security are more expensive than the original cost of the van itself.

As of 8/13/2023, we have raised $20,000 and have submitted grant and funding proposals totaling an additional $10,000 if everything is approved. That leaves Farrah needing $52-62,000.

Many of our friends and family have seen Farrah's recent struggles and ask how she's doing or inquire about anything they can do to help. Her situation is complex and sometimes it is hard to explain what is happening because there are a lot of variables and Farrah is not able to tell us very much. Asking for help is also hard because sometimes we really don't know what we need or don't want to burden other people.

In this case, we do know what we need and a couple of dear friends have convinced me this would be a way to let people know what's going on and help if they were interested and able.

I have learned that a lot of people know Farrah now, but did not know that her biggest struggles are relatively recent. For those who don't know or remember, physically - Farrah was small and did not talk. She had cognitive delays, but good receptive communication skills. So, she was physically healthy and won you over with a big smile and a rare "Hello!"

A lot then changed in a very short time. Here's a little bit of her background.

1. She has not always needed a wheelchair. In fact, when she first came into our family through foster care in 2019 she was a small 8-year old whom we had to work to keep up with.

She was and still is both developmentally delayed and non-verbal. While she had an unsteady gait and would trip or fall more than her typical peers, she was also quite quick when she wanted to be. She didn’t let her troubles slow her down and participated in many of the same activities as Toby.

Typical sibling stuff: playing & shucking corn.

It is hard to imagine, but they used to run through the house and play on the swingset with minimal assistance from us. Farrah used to carry her clean laundry basket upstairs unassisted. She'd also help Janice make cookies or wash dishes.

2. In February of 2021 Farrah had her first convulsive seizure and continues to have them on a regular basis today. The EMTs on scene could not identify a problem and neither could any of the doctors at the hospital. At the time, the best guess as that it was an isolated incident.

She did not have another episode until June 10, 2021. Her adoption was finalized on June 8 and two days later she started having convulsive seizures at lunchtime on the school playground. Local EMS transported her quickly to Lourdes Hospital in Binghamton, but she was then transferred to the Pediatric Neurology Unity at Janet Weiss Children’s Hospital in Danville, PA.

Farrah spent more time in an ambulance that day than she did in school that week. She and Janice would stay there for 3 days and return home without anyone having any idea what was happening or causing these events. Again, Farrah was her typical self at this point. Another small seizure event would happen in September 2021 and then nothing more would happen for 6 months.

June 8, 2021 - Farrah's Adoption Day.

3. March 20, 2022. Farrah began to have a string of seizures late at night that did not respond to her rescue medications. She was having convulsive seizures every 7-10 minutes, each one lasting about two minutes Two local EMS units attempted to help, but to no avail. It was determined that Farrah would need to get back to the Ped. Neuro Unit at Janet Weiss, but driving her 2.5+ hours was not an option. Still experiencing seizures, she was flown by helicopter to Danville, PA. Still experiencing seizures, at 2 AM she was intubated and sedated in hopes of breaking the cycle. It worked. The medical teams had counted over 20 seizures before getting them to stop. These events led to another 3-day stay in the hospital where we were referred for several evaluations. Once again, at the end of the stay she was back to her normal self. More tired, but seemingly her normal self.

4. In August of 2022, we attended an evaluation with a rehabilitation specialist who diagnosed Farrah with Spastic Quadriplegic Cerebral Palsy in combination with Non-medically Controlled Epilepsy. Farrah’s ability to walk and get around had begun to decline substantially, but her social desires have remained intact. The same medications she needs to reduce and control seizures also have side effects: blurred vision and dizziness.

She still enjoys going to school and church and interacting with her peers. It is simply more difficult to offer her these activities with her limited mobility and the fact she is now almost 12 years old. Carrying her is not really possible anymore.

She really does like school. She has friends & her teacher keeps her busy practicing academic & social skills.

Walking into school on her first day in Oct. 2019...

...having fun inside the classroom...

... and fun outside of class.

Within the house, she has a walker/gait trainer that allows her to navigate somewhat independently. (photo below)

Outside of the house, we have been using a special stroller that many of you have seen. (photo below) Unfortunately, it is not designed for extended use. Farrah is almost too big for it as it does not do well with wear and tear. We had to have it replaced once under warranty and it is no longer in production, so getting replacement parts has been impossible.

5. Farrah's doctors documented her need for a specialized tilting wheelchair. This wheelchair will allow her to go to school, church, therapy, doctor's appointments, and other places. When needed, she can use it within our home and when we go for walks in town. (photo below)

The good news is that it is designed for extended use and will grow with her for several years. The bad news is that getting it into and out of our current vehicle is difficult at best. The wheelchair must be disassembled, stored in the trunk, and then reassembled before getting her in and out of the vehicle. It is very heavy and this is hard to do without potential damage to the car or the chair. Even routine travel to school and doctors is hampered due to the extra time getting her in and out of the car.

6. As I said, when Farrah came to us, she didn't talk and needed to be potty trained. Those were issues we could work with. Today, she is still non-verbal, but she is potty trained! We have been able to include Farrah in most of our normal family activities and trips.

Before needing the wheelchair our family trips included visiting family, friends, and famous or historic places close to home as well as Ohio, Michigan, Washington DC, Indiana, New York City, and Kentucky. Farrah went on these trips with us and enjoyed participating with the family. With a little help from Toby, she has even completed the Junior Ranger Program from the National Parks and earned a few badges in Dayton, OH and Gettysburg, PA. The kids are the same age and have been able to do typical sibling things.

Today, Farrah’s opportunities to be fully included in family travels are typically limited to events close to home where luggage is not needed. We have to choose between luggage and a wheelchair in the trunk.

We love Farrah to pieces and never want her to feel left out. Physically and academically, her CP and Epilepsy have taken quite a toll. Getting her to school and doctors is important. Having her spend time with her friends and peers at church and in the community is so very valuable.

Included below are photos of Farrah doing some of the things that she used to do and where she is at today. It is hard to see how far she came from 2019 to 2021, and then to see where she is now. If you are in a position to help us meet our financial goal, would you please make a donation to Wheels for Farrah?

Thank you.

-Duane & Janice

Rock climbing at the playground.

Getting our Jr. Ranger badges at Dayton Aviation in Ohio.

Her first Mother's Day card for Janice. It was drawn with assistance, but she made it and delivered it. :)

Farrah loves to go to AWANA and be part of the kids' program at church.

Visiting Gettysburg NPS & earning another Jr. Ranger badge.

Farrah's first 3-day stay for seizures. June 2021.

She was able to feed herself, even if it was messy.

Visiting Hershey & meeting the Reese's Cup Guy.

Farrah and her hot pink gait trainer.

Farrah's new wheelchair. Super sturdy & super heavy.

It should fit her for another 5-7 years, maybe more.

Her stroller. It works for short times, but she is almost grown out of it.

July 2023. Farrah took her new chair for a test drive around town.

She was able to visit United Fire & Busy Bee Cafe.