Mobility Dog for Sadie

Most of you know the story behind the health concerns of our oldest child, our daughter Sadie. For those of you who don't know, please keep reading and help us in getting our daughter the service dog she so desperately needs.

  Sadie was born premature at just 24 weeks old. She weighed 1lb and 12 oz and was 12 3/4 inches long. She was so tiny and so precious. We were told numerous times that she only had a 30% chance in surviving her birth and not much of a higher chance surviving so many complications while in her 4 month stay in the NICU. 

 Luckily, God answered our prayers and at 4 months old and 5lb Sadie was finally able to come home. Common among preemie babies, Sadie came home with an apnea monitor, a pulse ox monitor and oxygen. 

Over the next few years we watched her grow into this strong, beautiful independent little girl. But, for every gain there seemed to be a setback. There were tests done for just about everything. She was diagnosed with asthma, an auto immune disorder, hand tremors and later epilepsy. She has small lungs that have fluid down at the bottom constantly and if she gets too close to someone sick she ends up with pneumonia.  She was also having grand mal seizures frequently which were first believed to be febrile until she was 4 years old and diagnosed with epilepsy.  At about 6 years old she was officially diagnosed with a new type of seizure, absence seizures, and was told she was a failure to thrive child. She is hardly ever hungry and has to take a medicine just to make her hungry enough to eat. This made it difficult to adjust her seizure meds to help keep her seizures under control. We soon later started a GoFundMe campaign to get her a seizure dog as absence seizures are hard to catch and still leave her utterly confused afterwards. Sadly, we were scammed out of the money we had raised and were left with no service dog to help her. We gave up.

  A year later when Sadie was 7 years old her pediatrician referred us to the Florida Epilepsy Center. Originally it was in the hopes that Sadie would be a candidate for a brain surgery to remove her epilepsy. They would go in and place an EEG grid directly on her brain, find out the part of the brain that was seizing and then remove that part of the brain. She was turned down after discovering it's her whole brain that seizes.  It was also around this same time that we noticed she started having screaming fits of pain in her legs and was collapsing a lot, unable to feel her legs to stand. After multiple MRIs from her brain to her spine and legs she was diagnosed with Demyelination , Symptomatic Cerebral Palsy (until it worsens and then will be Cerebral Palsy) and Periventricular Leukomalacia (PVL). The myelin (protective covering of the nerves) was gone and the PVL ( a common brain injury found in premature infants) meant she has death of small areas of brain tissue around fluid-filled areas called ventricles. The damage creates "holes" in the brain.  We were devastated and ecstatic at the same time. 

  We were ecstatic to finally have some answers as well as finding out that her condition was not progressive. We were devasted because she had these conditions and was told the damage had essentially already been done.

  Sadie has frequent nerve pain in her legs that has now spread to her arms and hands. She has paraesthesia as a result of this damage. This means she randomly loses the feeling in her legs which and is why she was collapsing. As a result she was prescribed a wheelchair and more recently wrist braces to help with her pain there. She receives both physical and occupational therapies every week and will for the rest of her life. Like I mentioned before, her conditions are non progressive but because of the damage already done she will be like this for the rest of her life and was recently told that it is expected to worsen as she gets older. 

  This is why her pediatrician and epileptologist have asked us to get her a mobility dog. We were uncertain after the trouble and disappointment after the seizure dog debacle.  But after being told that it would help her get her chair if she fell, pick something up she dropped because of tremors or weakness, etc. we dove right in. We applied for her to get a mobility dog through a nonprofit organization... New Horizons Service Dogs in Orange City, FL. The cost of training a service dog is estimated at around $25, 000. We are trying to raise $5,000.  We know it's a lot to raise and appreciate all the help you have to give. 

                 Thank you from the bottom of our hearts!