Camelia's Wheelchair Van
My husband and I are a couple residing in Fort Lauderdale Florida with our two beautiful kids. Our 14 year old daughter and our 7 year old son. Our daughter Camelia has development delays which requires her to use a wheelchair. Unfortunately the cost of a handicapped accessible van is more than we can afford. We’ve started this Go Fund Me Page in efforts to raise the money to purchase an accessible van.
I would like to say thanks to Leonard and the rest of management at Ride-Away. That took their time off to help with the Proposal knowing that we aren’t able to afford to pay as yet. At the bottom is the Proposal of the Accessible Van. If you have any questions Call and Ask for Leonard he will be happy to share all information about this Fund.
To give you guys a history of our daughter. Camelia was born in Antigua on October,14,2003. At birth she had a closed posterior supratorcular encephalocele of about 6 cm in diameter with an underlying bony defect of about 3cm in diameter for which excision of the vestigial brain tissue contained in the sac (sac like protrusion of the brain)and closure performed on the 21st of that same month followed by post operative recovery. However this underlying bony defect wasn’t primarily fixed just the skin was closed.
However due to her condition, she developed a triventricular hydrocephalus which became clinically evident about 2 months after the operation. Therefore a ventricular-peritoneal shunt was inserted on the right side on January 6th 2004.
On February 10th, she had a revision of the shunt for an obstruction of the proximal end of the catheter, meaning the shunt had to be replaced due to it getting blocked.
Subsequently, on March 20th she presented once again with shunt dysfunction (shunt became blocked again), during which a sub clinical ventriculitis was detected (this is the inflammation of the ventricles in the brain, caused by infection), for which the shunt was externalized on the 26th of that month and treatment with intraventricular and intravenous antibiotics instituted.
On the 13th of April, on obtaining clear and aseptic CSF(cerebrospinal fluid) with normal protein content, a new system (shunt) was inserted on the left side but lasted only about two weeks for which she had to readmitted to the hospital with shunt dysfunction associated with ventriculitis once again for which a ventriculostomy was performed.
It was later recommended that Camelia be brought to the US as soon as possible for further treatment since they didn’t have the optimum conditions there to continue her management.
September of that same year Camelia was flown to the US accompanied by me (mom) for neurological assessment. We had the pleasure of being seen by Dr. Shirley Campbell-Mogg here in Fort Lauderdale who then performed a physical examination. It was determined that her development stage was slow.
In October, 2004, we were referred to the division of neurosurgery, where she was seen by Dr Ian Heger at the Joe Di Maggio Children’s Hospital. A CAT scan was performed and revealed a grossly dysmorphic brain with only some small cystic spaces in the central part of her brain consistent with the ventricles. Otherwise the system appeared to be decompressed. Concluing her diagnosis, Hydrocephalus, Microcephaly, Craniosynostosis secondary to chronic shunting and Occipital encephalocele. At this time there was no evidence clinically that her shunt was malfunctioning, however this would no way, improve her cognitive outcome which he felt would be extremely limited and poor. In August of 2007, she had to be admitted to the ER due to shunt exposure, at which time the shunt was completely removed by Dr Heger which was later determined that there were no visible signs of any built up fluid. Her progress will of course be monitored to ensure no future fluid build up.
As time progressed Camelia did continue to show signs of development delays. We did notice all of her motor skills on her right side are much slower than on the left. She cannot walk on her own. She is able to walk via an adaptive walker, with hip and forearm prompts with close supervision. She is unable to use her right hand, she has a right hand neoprene thumb loop splint to help improve thumb/hand position. She attended the UCP preschool of south Florida (United Cebral Palsy) preschool , then went on to Maplewood Elementary, Country hills , Park Lakes elementary and now attends Lauderdale Lakes Middle school where she receives Exceptional Student Education services.
She requires monitoring to ensure her safety due to her physical and orthopedic limitations. Camelia uses a helmet to protect her head, Despite her limitations she is the most happy and social child you would ever meet. Due to her orthopedic limitations more resources became available; we were referred to the Shriners Hospital for children in Tampa. Shriners Hospital focuses on a wide range of pediatric orthopedic conditions. All services are provided in a family centered environment, regardless of families’ inability to pay. Shriners provides transportation at no cost to patients who cannot get to the hospital, via Mahi Shriners based in Hollywood Florida, for patients residing in the surrounding areas. This is how we are able to navigate back and forth for all her follow up appointments and care.
There, Camelia is seen by Orthopedic surgeon Dr.Mason. Her diagnosis is Hemiplegic (Congenital hemiplegia); contraction of joint lower leg. Camelia was provided with a wheelchair, a new walker and hand splint. She continued to receive follow up care which was also determined that she would need surgery on her right leg, as her leg was shorter than the left. As she was growing, the leg continued to turn inwards. She wasn’t able to place her leg flat on the floor at all. This 2 hour surgery would entail right distal hamstring release, tendo Achilles lengthening, plantar fascial release, posterior tibial tendon transfer, and anterior tibial tendon transfer.
On August 13th,2014, Camelia was admitted for surgery, which was done by Dr. Mason at the Shriners Hospital. Camelia was required to wear a cast over the next eight weeks with cast change in between. After further follow ups, she was finally able to have her cast removed. She was then fitted for a leg brace which she now wears. A shoe left has been attached to the bottom of her shoe; as her hamstrings continue to stretch, to help her stand better.
Camelia continues to receive follow up care at Shriners, she even started training for an electric wheelchair. As you all know transportation can be a bit challenging at times getting around, this is why we are in need of an accessible wheelchair van. My family and I would be so grateful to have this to get our daughter around safely to and from her doctor appointments; and everywhere she needs to be with no hassle.
Other ways you can help is by Going to My Service Choice and pick a Service that your're already paying for and by becoming a customer to help Camelia to get an Accessible Van. Also When you become an MSC customer, a child gets fed. And when you pay your select MSC bills each month, another child gets fed. It doesn't get simpler or more powerful than that.
www.MyServiceChoice.com
Thanks to everyone for taking the time to donate and encourage us we are really appreciative of your help.