Miles for (and with!) Little Bee

"Miles for (and with!) Little Bee" is taking a break from accumulating miles this week (March 17th-25th) and will be swinging for inclusion instead! 50% of all donations received here will be transfered to The Recess Project Swing-A-Thon fundraiser. The aim is provide a public school with an inclusive wheelchair swing. Check the organization site: https://www.therecessproject.org/

Little Bee is a very energetic and smiling 5-year-old girl who loves music, books and exploring. She has an incredibly huge drive, is an outdoor enthusiast and is always up to do new things. She visibly can't wait to do by herself all the things mom does like running, skiing or riding a bike, but for Little Bee it takes a whole lot more effort and help than for any other kid as she is a perinatal stroke survivor. Her stroke left her with considerable damage in various parts of her brain. She has cerebral palsy and cortical visual impairment (CVI), which despite being the leading cause of visual impairment in children in developed countries, is poorly understood, even by health and education professionals. She also has complex communication needs as she cannot talk yet and relays mostly in hand signing. This can be a bit challenging due to her cerebral palsy and vision impairment. But all that is not stopping her from understanding two spoken languages at home (and now successfully added English as a third one at school!), constantly moving around, asking people to sing a song, read a book, go outside, play choo-choo train or a chase game. And since learning to walk independently at almost 4 years old, she now deeply enjoys hiking!

As her mom, I have been overwhelmed by how energetic and determined she is, so I can’t help but be the same and give 200% back to her. So, for the third year in a row, I am taking a challenge to raise funds to better provide her with therapy modalities that are not covered by insurance. I am setting up the goal of reaching up to 224 miles this year, either with her walking by my side or dragging/pushing over 50 lbs. of child and trailer/jogger.

In 2022, the challenge #222milesIn2022 was born and Team Little Bee successfully completed it! We ended up going way over 300 miles and even competed in a ski race, 6 running races and tried a mini triathlon! I had DIYed her bike trailer so it could be used as a ski sleigh for our ski adventures. At the time Little Bee wasn’t walking yet and it turned out to also be a great all-terrain hiking trailer or to run hands free. It got me hoping I could inspire more families with disabled kids to use such a system to enjoy the outdoors in any season.

In 2023 we got so close to reach our goal #223milesIn2023…We didn’t race as much, but proudly, the bulk of our mileage was done walking and we successfully completed the #52hikechallenge in parallel. Little Be walked on her own feet 59 miles of the 194 we accomplished together! Considering this was her first year walking EVER, it is quite a feat.

The raised money helps us to pay, each year, 3 movement intensives, 2 Retinal Neuromodulation consults at the Mind-Eye Institute and a consult with a podiatrist specialized in children with cerebral palsy, none of which is covered by insurance and requires our family to travel.

In 2023 I also took the difficult decision to switch careers and start a 4-year training to become a Feldenkrais practitioner. This movement method accesses the nervous system and relies on the concept of neuroplasticity (the brain’s ability to evolve and reorganize itself in new ways, all throughout life). Little Bee has greatly benefited from this method and an extension of it, which is called Anat Baniel Neuromovement. We have been either traveling or had a visiting practitioner come over in the past three years. Practitioners are scarce and most likely Little Bee will need services all throughout her life to move beyond her stroke-induced limitations. We have witnessed how powerful this method is and I not only want to be able to help my daughter myself so we can reduce our trips but I now feel like I must help bringing this wonderful modality to other families. It has and will add up tremendously on our bills but I am convinced it is an investment that goes well beyond our family.

We struggled to gather enough funds to buy her a speech communication device but luckily, we were awarded a grant from the Orange Effect foundation last year. Still, we might need to reach out to specialized speech pathologists (who might or might not be covered) as we need someone who is well versed in her visual impairment (as it impacts the use of the communication device), supports our daughter’s trilingualism and her way to process language.

Last year all of these expenses already accounted for more than 50% of our income and this year we discovered yet another alternate method, that is not covered, to help her in her communication and cognition development…

It takes a village to raise a child (which might rather look like a full city for Little Bee!) and for a child with very specific needs, that could mean reaching to specialists all over the country and reaching to YOU. You can be part of her village too and help us cover all these out of pocket expenses, trips, accommodation, and specialized equipment.

The goal is then to reach $35K to cover Little Bee’s ongoing rehabilitation-related expenses of 2024 and tuition to become a Feldenkrais practitioner myself.

Many, many thanks to you all for embarking on this adventure with us!

FAQ

Q: Can I pledge less than a dollar per mile? Giving $224 or more is too much for me. A: Absolutely! Some have pledged 10c per mile. Also, FYI pledges convert into donations monthly. But you could also consider making a flat, one-time donation of a lesser amount.

Q: Can I make a one-time donation instead of monthly ones? A: Yes, flat donations (of any amount by the way) are also a wonderful way to help! This way we benefit from funds readily available to us

Q: What happens when I make a pledge? A: When you pledge it is like you make a “bet” on our mileage. You will get a confirmation email from Pledge It with details. Then pledges will convert to donations at the end of each month, after the miles completed have been submitted, and an email will be sent letting you know your credit card will be processed. You can then maintain your pledge or cancel anytime.

Q: How can I follow Little Bee’s progress and miles completed? This page will get updated with our mileage monthly. You can follow along on Little Bee’s mom Instagram account @RiriMamaBear to get periodic updates on our adventures. Follow #MilesForLittleBee and #224milesIn2024 to get updates specifically on our mileage and the progress of the fundraiser. Our mileage will also be submitted monthly on this website.

Q: What exactly is the money going to be for? A: Little Bee has a tremendous potential and we have found movement modalities called Feldenkrais and the Anat Baniel Neuromovement Method which have been very effective unleashing it. We started using this alternative therapy approach almost two years ago and we’ve seen wonderful progress! Unfortunately, while it has proven to be incredibly beneficial, it is not covered by insurance and must be paid out of pocket. Furthermore, we have no available providers in the state we live in, so we have to travel or bring a practitioner in several times a year for intensives. Three movement intensives add up to $4,500.

We also discovered the Mind-Eye Institute in the Chicago area in 2021 and have been impressed with the results. They are an optometry practice specialized on neuro-optometric rehabilitation through one-of-a- kind treatments. Using prescriptive eyeglasses, colored filters, prism lenses or other optometric interventions, they selectively stimulate the brain with light dispersed on the retina. Their treatments helped our daughter to be more aware of her environment while outside (which is a very complex environment for her), overcome a very distressing sound sensitivity, improve her spatial awareness and her receptive language skyrocketed! Sadly, our insurance does not cover expenses for providers out of state, so we must pay these services out of pocket too. Two consults at the Mind-Eye Institute add up to $2,680.

The remaining tuition for the training program to become myself a Feldenkrais practitioner is $14,300. While it’s not to be paid in full this upcoming year, it will be lovely to not worry so much about

An extra $7000 budgeted for the therapies that we want to try this upcoming year.

Finally we estimate lodging and trip costs to add up to $6,500.

Q: What else can I do to help? A: Sharing! You could also cheer us on by working out towards the same goal of 224 miles in 2024. Hiking, skiing, biking, running, swimming… whatever suits you. You could take a picture and use the hashtags #224milesIn2024 and #MilesForLittleBee and tag us on Instagram so we see you! If you have alternative fundraiser ideas/platforms that we could benefit from, please let us know.

Q: Can I take a picture of you guys to share? A: Thanks a lot for helping spreading the word!  However, we would like to ask you not to take Little Bee’s full face nor to share her real name online. I hope you understand!