It is so important to have a solid support system when you're on this journey and we want you to know you're not alone. Being able to connect with others that are going through it also can be extremely helpful. Whether you are just starting out or a veteran special needs parent, check out these amazing kiddos spreading awareness.
Haddiehttps://www.instagram.com/nay.roseth/
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. Haddie came into the world on September 5th 2014 after many hours of labour via caesarean.
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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 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!
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!
Dexter lovedexter.weebly.com
www.instagram.com/lovedexter3 Meet Dexter
Dexter is a happy, determined, cheeky five year old. He was born at 31 weeks gestation. Dexter spent the next 122 days in three NICUs. When he was born he was suffering from pneumonia and was a sick little baby. His brain damage was found when he was 30 days old. We brought him home when he was four months old. Dexter has level 4-5 spastic dystonic quadriplegic cerebral palsy. He has a wheelchair and is totally dependent on us. He does weekly physiotherapy and is very determined. Dexter is always proud when he achieves new goals. He loves his hydrotherapy sessions and loved horse riding. Dexter is non-verbal, but very noisy. He likes telling us about his day and gets frustrated when we don't respond. We use communication books, so we can talk about what happened at school. Dexter has cortical vision impairment (CVI). His eyes can see, but the messages to and from his brain get lost. Some moments, Dexter can see. At other times, he has difficulty seeing and focusing. He is currently trialling an eyegaze system; operating an iPad with his eyes. When Dexter was 13 months old, he was diagnosed with hepatoblastoma (liver cancer). This meant he needed surgeries and chemotherapy treatments. For a while, he was very sick. We're lucky because Dexter is now four years cancer clear. |
Dexter had a femoral osteotomy His femur was cut, turned and re-positioned in his hip socket. He was in a brace for two months. As a result, he now has one leg two centimetres shorter than the other. He needs a wedge placed under his shoe, to make is legs level on the ground. Despite everything, Dexter is a happy boy. He started mainstream kindergarten in 2017 and is loving it.
We make sure he doesn't miss out on too much. He has been on flying fox, on a stand up paddle board, has a bike, has been surfing and has danced on stage at three annual concerts. He's a great kid and we share his adventures and raise awareness of disabilities and childhood cancer on his webpage.
We make sure he doesn't miss out on too much. He has been on flying fox, on a stand up paddle board, has a bike, has been surfing and has danced on stage at three annual concerts. He's a great kid and we share his adventures and raise awareness of disabilities and childhood cancer on his webpage.
Liawww.Instagram.com/life_with_lia
www.Facebook.com/lifewithlia Lia was born in June 2014, full-term after an uncomplicated pregnancy by repeat cesarean section. Lia was a BIG girl (9lbs 2oz) and not completely head down, so they had a really hard time delivering her. She had a lot of trouble breathing initially, but being a Labor & Delivery nurse myself, I chalked it up to her rough start and didn't think too much of it. At about an hour old, my son was holding her for the first time, and she stopped breathing and was completely blue. They took her to the NICU for testing. After hooking her up to an EEG, they discovered that the apneic episodes she was having were actually seizures. She had over 45 seizures in the first 36 hours of life. Every single time, she stopped breathing completely for over two minutes, and had to be resuscitated. We weren't even sure if she was going to make it through that first night. The next day, an MRI revealed that Lia had an in-utero ischemic stroke in her left temporal-parietal lobes of her brain. They also had learned that Lia was born with two congenital heart defects, pulmonary stenosis and a fenestrated atrial-septal defect. After over a week in the NICU, Lia was stable, and we were sent home with a laundry list of specialists to see for follow up.
At three months old, Lia's pulmonary stenosis went from mild to severe in one week's time and she had to have a cardiac cath with balloon valvuloplasty to correct her pulmonary stenosis. It worked beautifully, and from a cardiac standpoint, Lia only gets followed once a year now. Lia also started her in-home PT and OT at that time, because we started to see signs of spasticity and right-sided neglect from the stroke . Around 5 months old, Lia was officially diagnosed with right-sided hemiplegic cerebral palsy. I remember when her neurologist said the words outloud, I immediately started to cry. |
Even being a medical professional, before having Lia, I had this stereo-typical picture in my mind of what life must be like for a person with cerebral palsy, and just couldn't believe this would be the fate for my child. Looking back now, I can't believe how uneducated and wrong my thinking was that day. Since then, Lia has also been diagnosed with epilepsy. Shortly after her first birthday, I found her in her crib one morning completely lethargic with blue lips, an EEG confirmed seizure activity.Lia has complex-partial seizures in her sleep and just recently had her first grand-mal seizure. She takes medication daily to help control this. Lia has also been recently diagnosed with apraxia of speech. She has had some verbal regression over the past year, most likely seizure related, and now at almost 3 years old she is still completely non-verbal. Lia now sees 7 physicians regulary and has 5 PT/OT/Speech therapy sessions weekly.
Now that I got all the intense, medical details out of the way, here is what you really need to know about Lia. She loves life more than anyone I've ever met. She is ALWAYS so happy and patient. Seriously, nothing ever bothers her. Just last month she sat in a hospital bed for over 24 hours straight for a test, and never whined or cried once. She loves to eat, all day long! She always wants to be outside, and is constantly running (yes, I said running, she's a "gross-motor" rock star!). She is funny and ornery. She is strong-willed and determined. Despite the odds stacked against her, Lia is thriving! And even though she doesn't talk yet, she speaks to everyone she meets with the pure joy on her face and the twinkle in her big, blue eyes.
When Lia was a baby, I felt completely isolated and alone navigating this journey, I turned to the internet to find other parents going through similar situations. These groups and pages that I discovered on social media became my lifeline. I have learned more from these other parents than I could have ever imagined. More importantly, it connected me with some of the most amazing children and parents I've ever known, and to see them happy and thriving, helped me realize that it was going to be ok. More than ok, actually. Our life with Lia is not what I had anticipated, and yes, sometimes it's really difficult, but it is amazingly beautiful and full of so much joy. I can't imagine our lives any other way.
Now that I got all the intense, medical details out of the way, here is what you really need to know about Lia. She loves life more than anyone I've ever met. She is ALWAYS so happy and patient. Seriously, nothing ever bothers her. Just last month she sat in a hospital bed for over 24 hours straight for a test, and never whined or cried once. She loves to eat, all day long! She always wants to be outside, and is constantly running (yes, I said running, she's a "gross-motor" rock star!). She is funny and ornery. She is strong-willed and determined. Despite the odds stacked against her, Lia is thriving! And even though she doesn't talk yet, she speaks to everyone she meets with the pure joy on her face and the twinkle in her big, blue eyes.
When Lia was a baby, I felt completely isolated and alone navigating this journey, I turned to the internet to find other parents going through similar situations. These groups and pages that I discovered on social media became my lifeline. I have learned more from these other parents than I could have ever imagined. More importantly, it connected me with some of the most amazing children and parents I've ever known, and to see them happy and thriving, helped me realize that it was going to be ok. More than ok, actually. Our life with Lia is not what I had anticipated, and yes, sometimes it's really difficult, but it is amazingly beautiful and full of so much joy. I can't imagine our lives any other way.
Gigiwww.facebook.com/journeywithgigi
Gabriella aka Gigi was born with a rare genetic disorder called Incontinentia Pigmenti. At first we thought she just had a very mild case but when she was 2 months old, we found out that she had detached retinas. Over the next few months she had a few surgeries to try to reattach her retinas and to also remove the lenses in her eyes because she was beginning to develop a cataract. The surgery to reattach her retinas didn't work so she was left with just light perception.
Right before she turned 3 years old, she developed ocular hypertension in her left eye. This caused her to stay in the hospital for almost a week and damaged her eye to the point it was no longer functional. She ended up having an evisceration on her left eye and having scleral shells made for both eyes to help make sure her orbital bones grow properly. She has only had some minor issues to deal with since then. Through everything she has remained a happy, intelligent, beautiful little girl. She loves playing and listening to music and she loves to sing. She has a silly personality and loves making people laugh. |
Gisellewww.instagram.com/thespeciallifeofus
thespeciallifeofus.com At our 20-week ultrasound, we were told that our baby had a mild case of ventriculomegaly, which meant that she had an enlarged ventricle in her brain. However, we were reassured that it was mild and it was nothing to worry about based on the measurements. “The odds are in your favor” we were told. All prenatal diagnostic testing came back within the normal limits, so we felt confident that everything would be fine. On November 30, 2013, I gave birth to my overdue, yet tiny little baby girl, Giselle, without incident. The months rolled on and we had completely forgotten all about the ventriculomegaly – well, that was until we reached her 4- month well baby check-up and Giselle had not reached a single milestone. She’s fine. Kids are all different and she’ll catch up. By her 6-month check-up her pediatrician referred her to early intervention as a “precautionary measure”. The months rolled on and we quickly began to see the gap between her and her peers grow larger and larger. She found great difficulty in doing simple things like roll over, sitting up, being on her tummy, ect. What was originally precautionary intervention soon became a full-fledged investigation to find out what was going on. We were referred to every single specialist there was. Between 5 different locations all spanning different directions and multiple specialists, all we kept hearing was “We don’t know” and “Let’s wait and see.” |
We were never told officially Giselle had microcephaly. Instead we kept hearing that her head wasn’t growing proportionally and it was falling off the growth chart, along with the rest of Giselle’s measurements. I came across the term microcephalus after looking over her therapy referrals and decided to look online for answers. BIG MISTAKE. I was scared and overwhelmed as it seemed her prognosis was grim. Nevertheless, we pushed forward and kept looking for answers with other specialists and online community forums because we were desperate for good news.
After over a year and a half of therapy, it became pretty evident that there was a great deal of weakness in Giselle’s feet/legs and that her hands (specifically her right) were experiencing sensory sensitivity. After lots of researching, we realized that it was mostly likely the result of cerebral palsy. It was a difficult process to get her officially diagnosed because between trying to rule out everything else first, it seemed as if the specialists didn’t want to consider the fact that cerebral palsy was the culprit to her lack of balance, and inability to crawl and walk at the time.
Finally, after her 2nd birthday Giselle was officially diagnosed with spastic quadriplegic cerebral palsy. It was an interesting day because although we had known for quite some time, the confirmation wasn’t any easier to process. The one thing that it did give us was the peace of mind in knowing what was going on, along with opening doors for additional services and community.
Giselle is now 3 years old and she’s defying to odds given to her based on her diagnosis. Even though she is moving to the beat of her own drum, she is thriving and learning despite the many obstacles that stand in her way. She is more than her diagnosis, but rather a tiny little human who has so much to contribute to this world, and I’m simply blessed that I’m able to share her story.
After over a year and a half of therapy, it became pretty evident that there was a great deal of weakness in Giselle’s feet/legs and that her hands (specifically her right) were experiencing sensory sensitivity. After lots of researching, we realized that it was mostly likely the result of cerebral palsy. It was a difficult process to get her officially diagnosed because between trying to rule out everything else first, it seemed as if the specialists didn’t want to consider the fact that cerebral palsy was the culprit to her lack of balance, and inability to crawl and walk at the time.
Finally, after her 2nd birthday Giselle was officially diagnosed with spastic quadriplegic cerebral palsy. It was an interesting day because although we had known for quite some time, the confirmation wasn’t any easier to process. The one thing that it did give us was the peace of mind in knowing what was going on, along with opening doors for additional services and community.
Giselle is now 3 years old and she’s defying to odds given to her based on her diagnosis. Even though she is moving to the beat of her own drum, she is thriving and learning despite the many obstacles that stand in her way. She is more than her diagnosis, but rather a tiny little human who has so much to contribute to this world, and I’m simply blessed that I’m able to share her story.