Morgan Elizabeth Jackson was born on November 21, 2011, 9 days early after a farily uneventful pregnancy, and delivery was quick and normal. We had our first indication that her brain wasn't forming properly during a routine ultrasound at 33 weeks. After she was born, while spending 3 weeks in the NICU, the full picture became more clear, that her brain was underdeveloped. Since that time, Morgan has been diagnosed with a number of issues that are each a result of the overall brain malformation (cerebellar hypoplasia, multifocal pachygyria, small brain stem, small pons, shallow sylvian fissures.) But, she does not have an overarching diagnosis or "syndrome" for all of her special needs.
Three areas affect Morgan the most:
Hypotonia - her muscle tone is severely low - she is 2 years old and cannot walk, much less stand, or even sit up. She can finally roll to one side, and does reach out to play with toys, or kick toys, but does not have the core strength to do much else. Besides her gross motor skills, this affects her muscles all over her body. She is unable to swallow liquid without it being thickened (dysphagia), otherwise she aspirates and would have pneumonia. Her eyes do not always focus on a central point, and they have a tendency to shake (strabismus & nystagmus).
Epilepsy - Morgan has had three types of seizures, and will remain on anti-seizure medication for the rest of her life. As of today she has some type of seizure activity every 5-15 minutes.
Aphasia - Morgan does vocalize, but does not talk, though we believe her receptive language (understanding us) is on track.
Morgan sees a neurologist, pulmonologist, opthalmologist, speech pathologist, dietician, vision therapist, occupational therapist, and two physical therapists, one that visits our home, and the other at Ranken Jordan.
Despite all that is stacked against her, Morgan is an absolute sweetheart, and we know she is benefitting from the fabulous team of specialists and therapists assembled around her. She loves to be flipped upside down, danced around, talked to, and has a GREAT laugh!!!
Those of you that know us, know that we don't ask much of others. We do not know what lies ahead, but we need to take things to the next level, and have come to a point that in order to continue help our #1 girl, we need some financial assistance.
Any funds raised will cover in this order:
1) Genetic Testing - $3000
Morgan's geneticist at Children's Hospital would like to submit her bloodwork for a short panel of tests at the Univerity of Chicago. This would test genes responsible for early onset epilepsy since Morgan's seizures started at 8 days old. With this test completed, we could hopefully find our first answer of "why" and it would enable us to focus on areas key to her genetic makeup and match us to other kids with similar genetic mutations. It can also give us a bit of a roadmap for her future which would be SO nice after two years of unknowns! http://dnatesting.uchicago.edu/tests/184
2) Outstanding medical bills, monthly supplies
With all the specialists we visit, 20% co-pays can add up quickly. We also have monthly prescription costs and beverage thickener costs not covered by insurance.
3) intensive therapy session(s) at facilities such as nowican.org or europeds.org
If we were able to raise enough funds, we have seen children benefit from week-long intensive therapy sessions. It would be so exciting to get Morgan into one of these programs a few times a year and get our girl on the road to mobility!
THANK YOU IN ADVANCE FOR YOUR SUPPORT!
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