The story of Maddison
Maddison, was born full term was a happy healthy baby for what we thought anyways… she hit all her milestones like she should such as talking, crawling, walking, potty training, everything. She went into preschool like a normal kid was hitting everything like she should. Kindergarten hit and we noticed she was having some troubles with her speech so we got her into speech therapy didn’t think much of it as her older sister and mom both were in speech therapy in school otherwise was hitting her milestones in kindergarten even writing her own name (was sloppy but she could do it) , sang her ABC’s, counting everything!! First grade hits, started having some vision problems so took her to the eye dr and said she was having some troubles but nothing huge concerning so got her glasses again didn’t think much as grandparents, uncle and even mom had or has glasses. Continue in first grade was doing ok, move to Oct 2021 she got a common cold as every person gets didn’t get better after couple of days so took her to the hospital. Drs did every test you could think of (urine, blood work, X-ray, covid, swabs, etc) everything came back normal, said it was a common cold let it finish running its course. Took her home that evening she started having seizures took her back in dr told me no she wasn’t cause they were absent seizures. Waited a week as we believed the dr, took her shopping as she want having multiple seizures so took her to a different hospital and that’s when they told us they believed was seizures but because they were absent seizures so they needed to do an EEG but had to have the pediatric neurologist do it. So we called Dr and had to wait a day to get it done. That’s when it was confirmed she was having MULTIPLE seizures ones we didn’t even physically notice. Started her on medication, she still was having seizures so I requested an MRI after fighting a couple months on that. We did one came back abnormal with fluid on the brain, loss of brian mass and cerebral apathy, with that we got sent to a generic dr. The genetic dr did blood work with different tests to where we found out she was finally diagnosed with CLN1 batten’s disease on April 13th 2022. Since then Maddison has lost her vision in her left eye, able to eat anything by mouth, her toiletries, walking, and most her her talking. We make every single memory we can with her and enjoy every day with her. With CLN1 most kids that are diagnosed at early age make it to age of 12 in her case we are not sure how long we have but we sure enjoy our time!!!