My angel ^Ariana^ & her brother Lucas have an undiagnosed regressive neurological disease, contagious whole-body giggles & a strength beyond what I imagine. The lessons they've taught are worth more than any schooling. They are lessons of the heart; heart tears.
Imagine your child is in constant pain. You search for answers from the best medical facilities in your area including Innovis, Meritcare, U of M Children's, Mayo but test after test comes back negative. You challenge every doctor to give you answers but sadly they can only tell you that there is nothing they can do to help and you are sent home with no reason to explain your child's screams of pain. You spend countless hours in the hospital attempting to console your child from this ravaging illness but nothing calms them. Insensitive doctors tell you to deal with it. Unknowing doctors tell you to go elsewhere because they don't know how to help you while insurance companies refuse to pay if you go out of your designated medical area. You loose friends because they are uncomfortable with your child's disability or feel guilt that their children are normal.
While normal children make snowmen, your child's body is overtaken with mounting medical conditions like fevers of unknown origin, spasticity, gall stones, bladder infections, kidney stones, loss of visual acuity, undiagnosed infections, chronic gastritis, stomach ulcers, reflux, hyper gag reflex, pneumotosis, malnutrition, pneumonia, chronic diarrhea, delayed gastric emptying, unexplained hair loss, eczema, ear sores, and atrial septal heart defect. Your child contorts their body into pretzel-like shapes to escape the pain but it only results in scoliosis. She no longer sits in her chair properly because of the twist in her spine. He no longer is able to reach and grab items because he fights a mixed tone disorder. Your child is confined to a wheelchair and relies on you for maximum support. You feel slighted when people complain about your child's tendency to grind their teeth in agitation from the torment they are in.
In your attempt to provide proper care for you child, your mailbox is overrun with medical bills. Your days are filled with doctor visits, therapies, insurance battles and appeals. Unexpectedly, some co-workers, friends and family are less than enthusiastic about your time away to care for your child and seem unsympathetic to your situation. In between you fit feeble attempts to parent two children whose only comfort comes in the form of medications like methadone, fentynol and chloral hydrate. You have one cupboard that is donated to your pharmacy collection but sadly this medication works randomly. You think about taking a dose yourself to help ease the trauma you deal with on a daily basis. Your rarely are able to keep up with making supper and doing laundry. You and your family are drained financially and emotionally. You start to question the reasons why this is happening to you.
Despite the devastation, your passion for children makes you forage on. They give you hope beyond hope of finding the answers. You turn to genetics for a reason but the medical community fails you again. They still have nothing to contribute. You spend weeks in Mayo, away from home, family and work but there is no diagnosis. Hospital stays are bi-monthly. Surgeries become a normal routine. You become acquainted with unfair diseases like Rhett syndrome, Leukodystrophy, Krabbe and you hope your child doesn't have it. You hope and pray for many things but mostly for your child to have peace. You feel helpless and lost because no one is able to tell you what is causing your child to hurt.
This is only part of the struggle that 7 year old Lucas and our 6 year old Angel ^Ariana^ Kaseman have faced in their short lives. This disease has stolen their childhood and keeps us frantic with worry. Their story is a sad reality of the demanding struggles we face in trying to find a diagnosis. Without it, medical management is futile and it is exhausting to try to bring comfort where no comfort can be found.
Around every corner and in every hallway, the cries of Ariana and Lucas are always there as a constant reminder. It never lets us rest.
Ariana's life was taken at the age of 6 on February 23, 2007 and Lucas lives at home wrapped in the arms of his loving mother in Fargo and his brother Alex, age 9.