Welcome to Our Fundraising Page for Team Haddie!
Haddie came into the world on September 5th 2014 after many hours of labour via caesarean. She was transverse which made it entirely impossible for her to come out on her own! Our first day together earth-side was filled with so much love, kisses and cuddles. But things changed dramatically on day two. We now had a baby girl that cried inconsolably for hours, nothing we did seemed to help! But not only was she miserable she now had a rash the covered her entire body, like nothing we had ever seen before. Speed forward a year, we still have a baby who cries for hours, with a mysterious rash. She also was not meeting any milestones for her age. She could not sit, or stand unassisted and eating by mouth was extremely hard for her - as she chocked on everything, we also had suspected she was having small seizures. We had seen 9 doctors, all with the same opinion “Haddie is colicky with a dairy sensitivity and severe eczema. I’m sure she will eventually be meeting milestones in no time as well” but my mama instinct knew we were dealing with much more, and we were prepared to keep pushing until we were satisfied! We finally met a paediatrician whom was willing to work with us, he sent us to a dermatologist and within 5 minutes of meeting her, she had a diagnoses for our sweet Haddie - Incontinentia Pigmenti (IP) is a genetic disease of the skin, hair, teeth and central nervous system. I didn’t know what this genetic disorder meant for our sweet girl but it was pure bliss to know we weren’t crazy! After spending hours researching and learning about our girls new diagnosis, we found out Haddie could possibly eventually have epilepsy. We crossed our fingers and hoped this would never be a part of her journey.
Unfortunately Haddie had her first seizure in July of 2016. She was transported via ambulance to the children’s hospital where she continued to seize for 3 days straight. After having several EEG’s, CT scan and a MRI Haddie was diagnosed with infantile spasms, focal and myoclonic epilepsy. She was placed on medication and we were sent home 10 days later. The medication didn’t seem to help, we were spending hours in our dark, quite room holding Haddie while she had episodes lasting up to an hour, three or four times a day. After many EEG’s, another MRI and several medication changes we started to notice valproic acid drastically decreasing her seizures and has continued too. Haddie still has three to five seizures a week but they are much less violent and more manageable.
Though we had a diagnosis for Haddie we still felt that there may possibly be more going on, something just wasn’t meeting up as she was having issues that didn’t correlate with her newly diagnosed disorder. See Haddie always struggled with breathing, and reoccurring chest infections. Most recently spending eight out of twelve months of 2017 in PICU at the children’s hospital for bilateral lung collapse due to pneumonia. These breathing and lung symptoms did not correlate with IP. We decided to do genetic testing to see if there was more to Haddie’s story. We got the results this past November confirming the IP diagnosis, we also found out that one of Haddie’s genes MECP2 was mutated. This meant another new diagnosis for Haddie- Rett Syndrome. Rett syndrome is a rare genetic neurological and developmental disorder that affects the way the brain develops, causing a progressive inability to use muscles for eye and body movements and speech. It occurs almost exclusively in girls. Most babies with Rett syndrome seem to develop normally at first, but after about 6 months of age, they lose skills they previously had — such as the ability to crawl, walk, communicate or use their hands. Over time, children with Rett syndrome have increasing problems with the use of muscles that control movement, coordination and communication. Rett syndrome can also cause seizures and intellectual disability. Although there's no cure for Rett syndrome, potential treatments are being studied. Current treatment focuses on improving movement and communication and providing care and support for children and adults with Rett syndrome and their families.
Though the odds are stacked against Haddie she still continues to fight every single day! We have learned new ways to support her, and give her the best possible life! No matter the big hurdles put in front of her along the way, we know Haddie will have the unconditional love and endless support of her family, friends & community!
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