Help for Paige #Support WHS
Donation protected
Our friends, Jim and Keely Absher, welcomed their baby girl Paige Elizabeth Absher on April 27th 2015. They were obviously very excited to give their 7 year old daughter Jorie the sibling she always wanted. Paige weighed 4lbs and 3oz and was about 17.5 inches long. About an hour after delivery the doctor came into the recovery room and said that Paige had a skin tag on her ear and that they suspect there may be a chromosomal issue and wanted the genetic specialist to run some tests. This was a complete surprise to them because in the months leading up to the delivery the medical team suspected a small but otherwise healthy baby.
Paige went through blood tests, kidney tests, echos, EEG’s, MRI’s, GI’s, swallow studies, among others. She has been seen by the neonatologists, pulmonologists, cardiologists, neurologists, nephrologists, optometrist, along physical, occupational, and speech therapists. Finally, after 10 long days the results were in. On May 7th, they were informed that Paige had a rare chromosomal defect called Wolf Hirschhorn Syndrome that happens in about 1 in 50,000 births. WHS has a long list of ailments but the most concerning are both physical and intellectual disabilities, including the inability to walk, talk, and eat, and most suffer from chronic seizures. Some ailments can be overcome or at least more manageable with extensive physical, occupational, and speech therapy. They realize that the odds are against them but they are committed to provide the best quality of life for their new beautiful baby.
They have spent the better part of a month in the neonatal intensive care unit working with the doctors and nurses to get Paige well enough to come home. They will require some in home nursing care and will be on a long journey of seeing specialists. The medical bills are rapidly accumulating and the ongoing treatment will be substantial. They have also been informed that some of the care that Paige will need to thrive may not be covered because the insurance companies deem certain care items and treatments as not being “medically necessary”.
Paige has suffered from heart issues that are thankfully headed in the right direction. She has a horseshoe kidney (kidneys are fused together) and is suffering from a urinary reflux. On May 19th, Paige had surgery to implant a permanent feeding tube into her stomach. Jim and Keely are hopeful that she will be released from the NICU in the next week or so. Please support this family so they can provide the treatment and care that their daughter needs and deserves without the financial burden being in the forefront. We thank you in advance for your thoughtfulness and generosity. For more information about WHS please go to http://en.wikipedia.org/wiki/Wolf%E2%80%93Hirschhorn_syndrome
Paige went through blood tests, kidney tests, echos, EEG’s, MRI’s, GI’s, swallow studies, among others. She has been seen by the neonatologists, pulmonologists, cardiologists, neurologists, nephrologists, optometrist, along physical, occupational, and speech therapists. Finally, after 10 long days the results were in. On May 7th, they were informed that Paige had a rare chromosomal defect called Wolf Hirschhorn Syndrome that happens in about 1 in 50,000 births. WHS has a long list of ailments but the most concerning are both physical and intellectual disabilities, including the inability to walk, talk, and eat, and most suffer from chronic seizures. Some ailments can be overcome or at least more manageable with extensive physical, occupational, and speech therapy. They realize that the odds are against them but they are committed to provide the best quality of life for their new beautiful baby.
They have spent the better part of a month in the neonatal intensive care unit working with the doctors and nurses to get Paige well enough to come home. They will require some in home nursing care and will be on a long journey of seeing specialists. The medical bills are rapidly accumulating and the ongoing treatment will be substantial. They have also been informed that some of the care that Paige will need to thrive may not be covered because the insurance companies deem certain care items and treatments as not being “medically necessary”.
Paige has suffered from heart issues that are thankfully headed in the right direction. She has a horseshoe kidney (kidneys are fused together) and is suffering from a urinary reflux. On May 19th, Paige had surgery to implant a permanent feeding tube into her stomach. Jim and Keely are hopeful that she will be released from the NICU in the next week or so. Please support this family so they can provide the treatment and care that their daughter needs and deserves without the financial burden being in the forefront. We thank you in advance for your thoughtfulness and generosity. For more information about WHS please go to http://en.wikipedia.org/wiki/Wolf%E2%80%93Hirschhorn_syndrome
Organizer and beneficiary
Jason Lehner
Organizer
Chicago, IL
James Absher
Beneficiary
