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Ansley's FANCY Wheelchair Van

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Will you help us get Ansley a FANCY van?

Ansley is diagnosed with Lissencephaly, Microcephaly, Cerebral Palsy, Epilepsy, Failure to Thrive, Optic Nerve Hypoplasia, Cortical Visiual Impairement, and a myriad of other diagnosis. Her life involves daily seizures, daily struggles (physical, mental and emotional) and global developmental delays.  Although physically disabled, Ansley Claire is the light of our life (and her friends and family!).  She brings joy, hope and sparkle to everyone who knows her. Ansley is 2.5 years old now and requires a wheelchair to navigate life. She needs an adapted van to make her day to day life and activities more manageable (appointments, therapies, etc).

Ben and I have applied for SSI and a few grants. We were denied SSI and with the grants, they are a long and tedious proves with often limited results. We are prayerfully trusting that the Lord will provide as he ALWAYS does. We have researched and researched and researched handicap vans and have decided the option that we think will best suit our family long term. It will cost us about $40,000. We would LOVE to save and raise close to half of that to put down to make payments attainable. We are listening for God’s voice of guidance and direction.

 

Will you help us get Ansley a fancy van??

 






Here is our story:

One Sunday morning I was sitting in Church with my grandparents and I leaned over to my grandma and pointed at (who I now know as Ben), and whispered to my Nanny “I’m going to marry him.” Ben and I met in High School on a Missions Trip to Mexico. My good friend was dating Ben’s brother; I told her I HAD to meet him. We met, fell in love and the rest is history, giggle. We dated the majority of our high school years. After I graduated Ben and I knew we were ready to get married. Ben popped the question in August of 2006, June 2007 we were hitched! Just babies, ages 19 & 21 J

We decided early on in our Marriage that we wanted to start a family. I knew I would have some troubles, as I don’t have very many periods (1-2/yr). So we decided in 2008 to try and start a family. After about 6mohts of “trying” (giggle!) we sought help thru my OB who then immediately sent me to a Reproductive Endocrinologist for further testing. I was then diagnosed with PolyCystic Ovarian Syndrome (PCOS). The first RE told me to “don’t even try, you won’t get pregnant.” The second was much more optimistic “You will be pregnant in 6 months, I guarantee it.” Well years later, we still were unsuccessful. Thru ought this time, I would occasionally ask Ben what he thought about Adoption, and he didn’t think that it was for him. I kept praying. One day out of the blue he came up and said he felt lef to Adopt. I jumped and next day had calls made to get our classes started. We went thru all of our training and home study and waited. We found out about a little boy who was in a medical foster home who had Cerebral Palsy (God was preparing us!!!) and we thought he was the ONE. God had other plans. We then sent our Home Study to every agency in Florida, and one day got a call, they wanted to show our Profile to a Birth Mom. We immediately fell to our knees and prayed this would be it. The next day we got the call saying the BirthMom chose US! We were over the moon with joy.

We went thru the pregnancy with BirthMom (along with caseworkers and attorneys), she was incarcerated the majority of the pregnancy so we didn’t get much time with her face to face. We set up the Nursery, had baby showers, and packed the diaper bag. We had dinner with BM, Attorney and CaseWorker a few days before the planned CSection and everything was a go. We had zero doubts, fears. Ben, myself and our families headed to the hospital on 3/25/14 at 530 am. We were so so excited that THIS was the day. The day we had been waiting, dreaming and praying for. The Csection was scheduled for 730 so we knew we would hear those “baby born” chimes about 30mins-1hr after. An hour went by, then 2, and we heard nothing. A nurse came out and got our caseworker, we knew something was wrong. The Caseworker came back and said the BM had changed her mind (I can’t keep from crying as I write this, remembering and reliving the worst day of our life). We fell hard. Sobbed. Pure shock. Our Caseworker told us to stay in the area in case she changed her mind again. After a few hours, I told Ben “it’s time to go home.” We when walked in the house, it was like hitting a brick wall. We had the whole house set up to come home with a baby. My mom, grandma and Ben immediately went and packed everything up, putting it in the nursery and shutting the door. Some sweet friends sent us out of town for a few days to get away from it all. To help grieve.

Four months later, we got a call from our Attorney saying BM was on the way to Jax with our babygirl. I was in shock. Disbelief. Afraid to be hopeful. We got to the Attorneys office and BM was there with her sister, handed us the baby, spoke for a few minutes and left. I sat there in shock, holding babygirl, so skinny, so frail, screaming her little head off. Both Ben and I were sobbing. I snuggled her and she snuggled right in and fell asleep. My heart was full. We took her home and did lots of skin to skin. We were just in pure shock. Pure bliss. Within 2 days we took her to see a Pediatrician, the first thing they asked us was “Do you know she’s retarded? Are you sure you want to adopt a handicapped child? We were stunned. We knew she was frail and unhealthy, but she was perfect. They sent us to the local children’s hospital for testing. We learned she had Microcephaly (Abnormally small head, due to little to no brain development), and that she would be delayed. We had no idea to what extent. Within the next few weeks we saw so many Specialist. We then noticed she was having infantile spasms (seizures) and was sent back to the Hospital where we found out she had Lissencephaly (“smooth brain” due to now development in the folds of the brain), which often goes with Micro and is referred to as MicroLissencephaly. They told us she was categorized as “moderately severe”, that she would not surpass 3-5month level, that she would never sit/crawl/walk/talk, yada yada. We also noticed that she kept her eyes closed all the time, and Ophthalmology diagnosed her Cortical Visual Impairment (disease of the eye) and Optic Nerve Hypoplasia (very thin nerve from eye to brain). We were very overwhelmed, but still very hopeful, We had hope that only God provides. We know he created her perfectly in HIS image. No mistakes.

We got home, and started her in Occupational, Physical, Speech and Vision Therapies. We were referred to a Spasticity Clinic, which is where we learned of her Cerebral Palsy Spastic Quadriplegia, which is another disorder of the brain which affects her muscles (severe tightness). Since all of this, we have had been hospitalized numerous times, 3 procedures and more doctors visits than we can count. She had a Gtube placed for feeding (due to neuro disorders, she has no hunger cues and can’t coordinate the suck/swallow),a nissen fundoplication placed (prevent throwing up all her feeds).  She recently had a Tracheostomy done so help manage her secretions. These were life savers for her, literally. We serve a BIG God. One who gives us peace, comfort and guidance. One who loves us thru our fears and doubts. We do not know what the future holds. We have been told time and time again not to “expect much” and “let’s see if she makes it past age 2”. And while we understand and appreciate that the Physicians have to be realistic we don’t take their word for anything. Our God holds the ultimate plan and we trust solely in that. She has blessed us beyond measure and we couldn’t be more proud of her!

We FINALLY finalized her Adopting (after many, many, many, many setbacks) in November of 2015. There was NO greater day than Ansley officially becoming a RICE. A part of our family. Oh the tears!!!!!

There are a lot of questions of how you can help, #1 is prayer. Prayer for Ansley to continue to thrive and stay healthy. She is doing AMAZING. She is thriving. Fights hard every single day. She is working on head and trunk control, and is recently starting HippoTherapy (therapy with a horse!), as well as ballet! She is as sassy as they come and likes to show it in therapies and while she’s having time in her stander. We recently ordered her a new wheelchair, and are starting to save to purchase a handicap accessible van. We know the Lord will provide, as he always does. 

As always, SPARKLE ON and thank you for loving our Ansley Claire and our family. Thank you for the encouragement, the support.

Organizer

Katie Rice
Organizer
Jacksonville, FL

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