I immediately got on the Internet and connected with other SMA parents. I wanted to give Scarlett the best life possible. I life full of love, grace and dignity. I didn’t want to just let her pass away without a fight. I wanted to give her a chance to live!
I quickly realized that giving Scarlett a good life would be expensive. There would be hospital stays, specialist visits, physical/occupational/speech therapist appointments, medications, vaccines and special medical equipment & supplies. Scarlett does have medical insurance but unfortunately they do not cover everything.
To help with some of Scarlett’s medically related expenses we set up a fundraising campaign through HelpHOPELive (formerly NTAF). HelpHOPELive is a 501©(3) nonprofit that helps patients and families like ours. They have helped Scarlett with things like co-pays for doctor appointments, medications, orthotics for her hands/wrists & ankles/feet, back-up power supply for machines, medical equipment and medical supplies.
HelpHOPELive will also help us with home modifications for Scarlett. We want to make Scarlett’s home completely accessible to her. We want her to be able to freely move from room to room and be able to participate in all of our family activities.
If you were planning on making an end of year tax-deductible contribution to a charity please consider helping Scarlett by making a donation to HelpHOPELive in honor of Scarlett Landefeld. Your donation will be used for medical related expenses that insurance will not cover. We specifically need funds to pay for:
• A modified bathroom. We would like to have a “roll-in” shower. This would allow us to place Scarlett in a bath chair and then roll her into the shower. Scarlett is going to continue to get bigger so this would be the safest way to give her a bath. We are also considering a raised bathtub.
• Widened doorways & hallways. Scarlett needs at least a 36 inch doorway and hallway to move around. The doorways and hallways in our home are now a little over 2 feet. Her wheelchair can hardly fit through a 2 ft opening.
• A ceiling lift track system. I am having trouble lifting Scarlett. It is getting to the point that it could be dangerous for the both of us. A ceiling lift would allow us to easily move her from room to room.
• Medications, medical supplies, communication devices (switch operating devices and/or an eye-gaze) and medical equipment (like a power wheelchair & stander) are also things that Scarlett will need.
If you are interested in helping Scarlett, you can donate 3 different ways:
1. You can donate online at: http://www.helphopelive.org/contribute/patient_results.cfm/patient/596EAD69-CBBA-AB4B-742E81A5582098F7 or by clicking the above link “Helping Scarlett.” There is also a donate link on www.ScarlettsHOPE.com.
2. By Phone: Call HelpHOPELive at 800.642.8399 and say you would like to make a donation in honor of Scarlett Landefeld.
3. By Check: Make checks payable to HelpHOPELive. Mail your check to HelpHOPELive at 150 N. Radnor Chest Road, Suite F-120. Radnor, PA 19087. Write on memo line “In honor of Scarlett Landefeld.”
HelpHOPELive is a 501©3 nonprofit so your contribution is tax-deductible. Your donation will go directly to helping Scarlett. Note: HelpHOPELive retains 4% from check/cash donations and an additional 3% from credit card transactions for administrative & processing fees.
If you have any questions please email me at AnnieLandefeld@yahoo.com. I would also like to do some fundraisers next year. If anyone would like to do a fundraiser in honor of Scarlett please let me know. Thank you!
I realize that not everyone can donate at this time but please know that we appreciate your support. Caring for a terminally ill child is difficult but having supportive friends and family defiantly makes it a little easier.
Having FUN with Christmas lights!
1 comment:
What a story!! Hope there is a compassionate response. You are all so brave. Thank you for your continuing efforts to give Scarlett the fullest life possible. I love you! Gramma
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