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This fundraiser ended on 10/06/10

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At the tender age of 7 months Lorenzo Jadeyn weighs only ten pounds and nine oz. Lorenzo has serious health conditions, since birth Lorenzo has been diagnosed with a seizure disorder, an intracranial bleed causing hydrocephalus , and Neurofibromatosis Type II. On a daily basis Lorenzo suffers from seizures. Medications are unable to control Lorenzo's seizures at this point in time. The seizures are accompanied by muscle spasms in his lower extremities causing his little legs to constantly stay contracted. He is a little happy guy who struggles with gaining weight and has been called a failure to thrive. I am Lorenzo's home Respiratory Therapist. Lorenzo also has a part-time home health nurse as well as a Physical and Occupational Therapists. Our team sees Lorenzo 3-4 times a month. This little guy struggles so hard on a day to day basis. Usually he is content and happy, as an infant should be. Although Lorenzo has developmental delays, his parents believe he will grow into a brilliant young guy who has a strong passion for Life. Lorenzo's Mother and Father have two older children. Since Lorenzo's birth this Family has suffered in many ways one cannot believe. Lorenzo was not expected to make it past hour 48. His parents had a funeral home and worse as casket prepared, all while Lorenzo's Mother was in the Hospital recovering from a Horrid Birth experience and an emergency cesarean delivery. With God's almighty Power and Grace Lorenzo seven months later is at home with his Family. The blood that was on Lorenzo's brain has completely resolved, leaving behind moderate to severe damage in the posterior fossa region of his brain. Neurofibromatosis Type II is a rare but genetic disease. Neurofibromatosis Type II commonly referred to as NF II, is caused by a defect in the gene that normally gives rises to a product called Merlin or Schwannomin, located on chromosome 22 band q11-13.1. NF II causes Malignant and Benign tumors to grow inside of the nervous system. It is believed that 50% of all patients with NF II develop spinal lesions. Lorenzo has a spinal lesion, also referred to as a Benign Thoracic Tumor. The tumor is compressing Lorenzo's spinal cord causing increased spasticity in his lower extremities. It is also believed Lorenzo is experiencing pain along with the spinal cord compression as Lorenzo could be happy playing one moment and the next he is screaming. Lorenzo also has enlarged ventricles that cause his soft spot to swell. When this happens Lorenzo becomes very irritable and often refuses to eat by mouth. At a fragile ten pounds and nine ounces, Lorenzo needs all the nutrition he can possibly receive. His mother Alicia, wishes to have a full time Home health nurse for Lorenzo. Though Lorenzo's state insurance provider will not allow this. Alicia feels Lorenzo needs special one on one attention through out the day. Feeding Lorenzo takes a lot of encouraging, as Lorenzo tires out usually five minutes within the beginning of the feeding. Obviously with Alicia being a full time stay at home Mother, having two older children she needs all the help and support from anyone offering. Lorenzo's Father Jesse works full time and is ever rarely able to make it home before 6pm. With that being said Alicia is solely responsible for all of Lorenzo's care as well as her older children. Our team helps Lorenzo's Mother when we are available to the Family for care. With Lorenzo's Father being in the irrigation field, this coming winter will be an ongoing struggle for this Family. The winter brings cold weather along with snow and ice. As winter sets in the Fathers work screeches to a halt. This Family has been unable to save money due to this un forseen circumstance. Alicia's pregnancy was normal and uneventful with no underlying conditions other than normal aches and pains a pregnancy would bring along. All ultrasounds and labs were normal and Alicia's prenatal care was sufficient. Lorenzo's Family travels back and forth from their hometown of Tulsa, Ok to Oklahoma City, Ok. Lorenzo's neurologist is Located there. With Lorenzo's Thoracic tumor compressing his spinal cord, his neurologist feels surgical intervention is needed. A board certified Neurosurgeon practices at the Mayo clinic in Rochester, Minnesota. Lorenzo and his Family would need to travel to the clinic for a consultation and imaging before surgery can even be considered. A surgery to remove this tumor is obviously very invasive and would mean Lorenzo needs downtime to recover. With his parent's having two older children at home, this would call for one parent at Lorenzo's side and one parent caring for the older children. This is where the financial burden comes. Lorenzo's Father has used up all paid vacation days his employer could offer. Lorenzo's Mother cannot work as she cares for all three children. This Family has one vehicle with transmission problems, they are still financing. The vehicle hardly fits this entire Family along with the children's three car-seats. As Lorenzo gets older and isn't mobile with his legs this Family will need a bigger vehicle to accommodate this child's needs and equipment. Every day is an unbearable struggle for this Family, although you would never know by sitting down with them. Lorenzo is covered by his states insurance program for children. His insurer would reimburse mileage in state as well as the care Lorenzo receives in state. This means Lorenzo's surgery itself would need to be paid for out of pocket, By no means is this Family prepared for that. Lorenzo's Family would need reliable transportation, safe lodging ( as they have small children). Lorenzo's overall health and mobility depend on surgery for the removal of the tumor. Fundraising efforts are needed for Lorenzo and his Family. Lorenzo and His Family need all the prayers, comfort, physical, emotional and financial support one could offer. Nursing Lorenzo back to health is a top priority for these parents. With the Support and Love of others this little guy will defeat this crippling disease and grow to be a fine individual despite all the challenges he is facing in his infancy.
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