Annebelle was born a perfectly healthy baby girl. She was 9 pounds 2 ounces and 41 weeks gestation with an uneventful delivery. We spent the usual couple days in the hospital post birth and then took her home. For four blissful days I was a mother of two amazing, healthy kids.
The day after leaving the hospital we took Annie into the emergency room because she had not eaten for over 8 hours. We were there for hours and saw multiple doctors, nurses and techs before a labor and delivery nurse came down to place her IV and immediately noticed that she was having neonatal seizures. Her pediatrician was called in and she was transferred to a children's hospital. That was the day that my entire life changed.
Annebelle was diagnosed with Incontinentia Pigmenti (IP), an extremely rare genetic condition that runs through my family. I had not tested for IP during pregnancy and Annie did not show any earmark signs of the disorder at birth so I naively assumed we were in the clear. Incontinentia pigmenti is linked to many neurological disorders, including epilepsy, but because the disorder was so common among my family and everyone had a relatively mild case I never dreamed the havoc the disorder could cause. Along with neurological problems, IP also gave Annie blisters on her limbs as a baby and dark pigmented “swirls” coving her body.
Annie spent 7 long days in the neonatal intensive care unit before being released with a diagnosis of IP and epilepsy along with extensive damage to one half of her brain, she was given a poor prognosis and we were warned that she would likely be developmentally delayed. She was enrolled in Early Intervention through the state and started occupational and physical therapy immediately.
While working with Annie and with the help of her therapist I noticed that she had a weakness on her right side, she was soon diagnosed with hemiplegic right sided cerebral palsy which eventually turned to triplegic cerebral palsy (involving her right arm and leg and left leg).
At this point Annebelle had dealt with more than a baby her age should, unfortunately that was not the end of her hardship. In March of 2016, a month before her first birthday, Annie was diagnosed with Infantile spasms. Infantile spasms is a rare, catastrophic form of epilepsy. It is harmful in the fact that it is continuously damaging her brain, infantile spasms consists of a physical “jackknife” spasm as well as a hypsarrhythmia in her brain. The longer that IS goes undiagnosed the harder it is to control. I believe Annie developed infantile spasms about a month before receiving a diagnosis and treatment. She went through a round of steroid injections twice a day followed by four anticonvulsant medications and the ketogenic diet, After over a year I think her spasms are finally under control. Her neurologist will perform an EEG to look at her brain wave activity to determine if the hypsarrhythmia is gone.
Annie’s cerebral palsy affects her mouth/face and makes it hard for her to move food to her back molars while eating, after a while she developed an aversion to eating orally and eventually received a feeding tube to help her stay nourished and hydrated.
Annebelle is now two years old and we’re getting the hang of our new life. We don't suffer through this disability, this is our life and we are going to embrace it.
Last August I decided I wanted to make sure that we did something good, I wanted to take our experiences and turn it into awareness and inclusion and help people. I created @abplusme and #normalizedisabilities on instagram to give people a glimpse into life with cerebral palsy with a twist of kids fashion. It was important to me to give kids with disabilities a voice, to show the importance of normalizing disabilities and inclusion and making sure that our kids get every opportunity as everyone else. The internet is full of pages raising awareness and sharing stories so I wanted to do something that would make us stand out, to make sure that we reached as many people as we could while also helping to introduce disabilities into modeling and fashion. Annie represents several clothing brands and shares her adorable outfits with the world, we have expanded to facebook and started www.abplusme.com.
Down the road I hope to initiate inclusion in our local community, to start a network of special needs families, and to make sure that no child with a disability has to worry about being left out or picked on. Inclusion and accessibility are so import and to me and I hope we can take our situation and use it to help other people.