Friends of JCDS wrote -
Help us to make a difference in Anisa's Life! Friends of JCDS was approached to help Anisa's family with an urgent need. While we cannot do this alone, we know that the community can help! Anisa's family tells the story the best! A NOTE from Anisa's Mom: This is our beautiful daughter, Anisa Perez. Anisa was born October 12, 1998. She was diagnosed with Tuberous Sclerosis when she was 11 months old. Anisa has tumors on her brain and kidneys. She began having seizures at 10 months old and continues to have them daily, sometimes 2-3 seizures each day. Anisa has been on numerous medications and has had brain surgery. Nothing has been completely successful. Anisa cannot, walk, talk or take anything by mouth. Her nutrition comes from a feeding tube and she depends on her wheelchair for mobility around the home, at school, and out in the community to spend time with her twin sister, Sienna, and her older sister, Ana. Let me explain what Tuberous Sclerosis is. It is a genetic disorder that can affect the brain, kidneys, heart, lungs and eyes. Anisa has been greatly affected by TS; however, she shows us her courage, strength and awesome personality every single day. In spite of all of her health challenges, these things do not keep Anisa from enjoying family, friends and fun. She likes going for walks in her wheelchair and swinging on the porch swing. She also likes going to the pool, concerts and Royals games! Anisa enjoys going to family functions and seeing all of her cousins, aunts and uncles! Family has truly been a big part of her life Anisa loves getting out in the community and being a part of her sisters’ active lives. Why am I here, you ask? Anisa’s first wheelchair lift was obtained through Kansas’s Home and Community Based Waiver in 2004. Unfortunately, this funding is offered 1 time only. I would like to ask for your help to assist my family with the purchase of a mini-van that can have a wheelchair lift installed on it. Our current lift van is a full sized 1997 Dodge Ram van with over 100,000 miles on it. It is less dependable and much more costly to maintain these days. The air conditioner went out in August. Living in the Kansas City area, it was too hot to go anywhere unless it was very early in the morning. And under these conditions, the summer seems way too long!! Anisa also requires a lift van to get to her local medical appointments. Two times a year, we make a trip to Le Bonheur Children’s Hospital in Memphis, Tennessee to see the clinical team that specializes in treating children with Tuberous Sclerosis. I am a single mother of 3 beautiful girls. When Anisa goes to the clinic in Memphis, we all go. Anisa’s oldest sister is olod enough now and could help me with the driving. However, our full sized van is a bit scary to drive given its age and size. I am hopeful that down-sizing to a mini-van so that my oldest daughter can help by driving will make for a smoother 9 hour trip, while I tend to Anisa for her feeding, positioning, suctioning, diaper changing and seizures. My case manager from Johnson County Developmental Supports has been working with me to raise funds to purchase a new lift van for Anisa. When I say “new”, I am referring to buying a used mini-van for $13,000 and then having the lift installed which is $17,600 for a total of $30, 600.00. It will be ‘new’ to us. A brand new mini-van with a lift retails for $57,000. We are happy to have a “new used van”. As I mentioned earlier, I am a single mother with three teen age girls. I need to work part-time due to Anisa’s health. She requires skilled nursing care and I have to be available on the days when the nurse does not come. Supporting a family of four on a part-time income takes much planning, careful budgeting, sacrificing, many prayers and a genuine faith in God’s provision. To date, we have received pledges from the following charitable organizations: Heartland Foundation - $500. UCP of Kansas - $2,000. First Hand Foundation - $2,500. Friends of Johnson County Developmental Supports, a charitable organization, has offered to assist us by setting up this page on Crowdrise and matching our donations, up to $ 1,000. We are hoping to raise the $30, 600.00. However, I know that I will have to see this through. It is a necessity for my family and not a luxury. I am praying that the amount I will need to borrow to finish the purchase of the lift van will be smaller, thanks to the kindness and generosity of wonderful supporters like you. Please visit our webpage and make a donation towards a lift van for Anisa. No gift is too small and every gift is appreciated. Thank you for visiting our page! Because Friend of JCDS is a 501 C 3, and our commitment to provide assistance to those who receive services from Johnson County Developmental Supports, we are working with her Case Manager to help make a difference. Your donation will be processed through Friends of JCDS, and we will hold the funds until the money is raised. Your donation will be tax deductible, with no fees incurred by Friend of JCDS, all funds raised thru this event will go directly to impact Anisa's transportation issue.