Children with disabilities are like Butterflies


With broken wings


They’re just as beautiful as other children


But they just need a little help


To spread their wings

 

Special notation for viewers


To help with ongoing medical needs, please donate here via Paypal.


To verify fundraising campaigns with the family, or if you have questions or concerns, you can contact mom Jennifer at 646-912-4099 or email her TheKei[email protected]. All funds donated will be used towards therapies and interventions not covered by insurance. Check out the family's Fund Raiser page.


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My name is Keira.


I am a little girl who has a lot of complex medical issues. I was born on September 1, 2007 at 32 weeks gestation because my mommy had preeclampsia and HELLP Syndrome. My birth was very dramatic. It has not been determined if I had my stroke during the birthing process or in utero. I was in fetal distress during labor and was bluish gray, unresponsive, and not breathing when I was delivered. A team of about 10-15 doctors and nurses provided medical interventions. After 9 minutes I took my first breath and was rushed to the neonatal intensive care unit (NICU) where I called home until October 23, 2007. I was on a ventilator for about 24 hours. My NICU stay was like a roller coaster. There were days I was stable and mommy and daddy could hold me and than days we didn't know what would happen second to second. 


I had my first surgery at 5 months old because I was unable to take a bottle or be breast fed. They placed a feeding tube into my belly and "wrapped" my esophagus in hopes my reflux would get better. I also had my tonsils and adenoids removed since they were causing serious breathing problems. I needed to have a chest tube placed because the one time I had pneumonia because I developed a pneumothorax. I also had an orthopedic surgery in Galvenston, TX called Selective Percutaneous Myofascial Lengthening (SPML for short). SPML is a specialized surgery that is preformed by only two orthopedic surgeons. It is a different kind of surgery for kids like me with cerebral palsy that will not need to be repeated over and over like the traditional surgeries for cerebral palsy. The SPML surgeons do not use botox to "relax" the tight muscles because botox will weaken the muscles after having these treatments over and over. In stead they do alcohol blocks for tight muscles and is usually a one and done procedure and does not weaken the muscle. The type of tendon lengthening that is done with SPML also will not need to be repeated like traditional tendon lengthening. There has not been any complications reported with SPML when not combined with any other procedure and the recovery time is days compared to weeks with traditional methods. There is also no restrictions after SPML surgery unlike the traditional surgery. 


SPML surgery helped me in a lot of different ways with mobility. I was never able to long sit (sit with my legs out in front of me) because the contractures in my legs as well as the tightness would "pull" my legs close to my body. It was painful and I would cry when I tried to straighten my legs. I couldn't stand on my feet correctly because of how deformed they were from my heel cords being so tight pulling them inward appearing like I had club feet. I would stand on either the outer sides or tops of my feet. I was unable to wear shoes because of the inward turn. I was not braceable because of how bad the contractures, tightness, and deformity of my feet were. Physical therapy was unbearable for me and all I could do was cry. I had a walker I never used because walking before SPML was not an option. After I had SPML surgery I could long sit, crawl more organized, stand on the bottoms of my feet, tolerate braces on my feet and lower legs, wear shoes for the first time, and I now love physical therapy. I love to stand independently in my walker and take steps with help shifting my weight. I continue to work on getting stronger in my legs and trunk area which will help me walk.I I will always also had major hip surgery at DuPont Children's Hospital in Delaware. My hips were dislocated and needed to be placed into the sockets. This was a very painful surgery and recovery. The surgeons had to break both of my hip bones and angle them differently to fit them into the sockets and attach them with screws.


I currently have metal plates in my hips. I will always have orthopedic needs due to Cerebral Palsy. I have overcome some of my medical issues since birth. I was cleared of reflux, a compromised airway, obstructive and central apnea, deformity of my feet, contractures in my legs, and tightness in my muscles and heel cords. I only need to be oxygen when I get sick. I continue to be followed very close by many specialists including a pulmonologist, neurologist, infectious disease, orthopedics, ophthalmologist. I am also in speech therapy (ST), physical therapy (PT), music therapy, occupational therapy (OT), and an unconventional therapy called Feldenkrais with Child Space. All of these therapies are helping me in all different areas. My speech and music therapists help me with communication since I do not talk yet.


PT helps me bare weight throughout my legs, weight shift, pull to stand, side step, and practice with a walker since I am not strong enough to walk yet. Occupational therapist helps me with fine motor skills, feeding and eventually to do basic skills so I can become more independent like brushing my hair, dressing myself, potty train etc. Feldenkrais with Child Space helps me in all areas my ST, PT, MT, OT does and has changed my medical status when it comes to seizures by creating new pathways within my brain. Feldenkrais with Child Space (FCS) was (partly) developed by the studies of the great Moshe Feldenkrais before his passing. Please visit the following link for a better understand about this amazing method

http://www.feldenkrais.com and http://childspacemethod.com.

My mom learned about this therapy in 2011 and I began sessions right away. My brain function has improved greatly giving me abilities to live a better quality of life. I have become more attentive, aware of my surroundings, participate in more purposeful play, movement in all areas has become more organized as well as significant improvement in my neurological status. I also understand some phrases like "come here", "spa time" (our way of saying its bath time), "lets go bye byes", "stand up" when I am in my walker, and "take a step" when I am in my walker just to name a few. I suffered a stroke and was deprived oxygen early on which damaged part of my brain. MRIs and Video EGGs have shown abnormal brain activity due to the damaged areas. These damaged areas are what caused me to have epileptic seizures starting at the age of 2. I began having Video EEGs yearly since the onset of seizures. In May of 2013 I had her yearly Video EEG which yielded "unexplained" results. My neurologist reviewed the reports numerous times because the information was baffling to him. The results showed no epileptic events, no brain abnormalities, and the tendency to have epileptic seizures are at a bare minimum. Compared to past Video EEGs that showed numerous epileptic events, abnormalities of my brain and very high tendencies to have epileptic seizures.

My neurologist said he can not explain the dramatic improvements and it doesn't make sense in the medical world for all of these changed to have taken place within a year. FCS method is the only logical reason why all of these changes took place. As you read in the above links, this method creates new pathways within the brain. These new pathways take the place of the damaged pathways and preform the tasks they are responsible for properly. FCS is not a "cure all" but has impact on all levels of development and in my case a huge impact on my neurological status. The creation of new pathways is called neuro-plasticity. Since the amazing results of my Video EEG my neurologist started to wean me off of 1 of 3 seizure medicines I take. He said my epileptic seizures have "changed" to non-epileptic seizures. Although these types of seizures can be caused by a lot of different reasons and need to be addressed I am a few steps closer to be seizure free. Some things that could "bring on" non epileptic seizures in my situation are frustration, depression, invasive medical procedures as well as migraines. My neurologist feels these are "triggering" the non epileptic seizures I am having due to developmental delay, my past medical history/treatments, and a family history of migraines. Even though I am a very happy child, he explained, I see people walking and eating everyday and hear them talking. He can't imagine I do not feel a bit frustrated and or depressed because I am unable to do these things although I am very motivated to learn these milestones! These are possibilities of why I maybe having non epileptic seizures. My neurologist, my mom and dad have no doubt that continuing FCS sessions will 100% "fix" my seizure activity by creating "healthy" pathways in my brain. As you can see this therapy is very important for me to attend!

These progressions may seem small for a typical developing child but exceptional to a special needs child who had not been able to do such easy tasks. I have a lot of motivation to succeed and I'm able to take in what FCS method has to offer. This specialized therapy plays a very important roll in my development and over all health. Although I have showed great improvements, evaluations I had in March of 2013 showed my functional level is below a 2 year old. My doctors and family think my progress is great considering all the medical problems I have not to mention being on heavy duty seizure medications. Now that my health is improving and receiving appropriate interventions and treatments I know I will meet even more milestones! My therapists teach my mom and dad things to do with me between sessions which they follow through with. I still have Chronic Lung Disease, Cerebral Palsy, Seizure Disorder (NES), Feeding Disorder (tube fed), Bladder Reflux and Global Developmental Delay. I still need a nurse to take care of me during school due to medical conditions. I also require a nurse overnight to give me tube feeds, medications, and whatever I would need. My mom and dad work very hard with me and I am sure I will over come some of these diagnosis. Obviously some do not have a cure for but with the correct interventions, treatments, and supports I can still live a very productive and independent life. I do not know what other things I will need but since cerebral palsy has no cure I'm sure I'll always need some type of equipment to help me get around. Since insurance companies do not cover FCS, my mom and dad hold fund raisers to be able to cover the cost.
You can view my current online campaign here

To verify fundraising campaigns with my family, or if you have questions or concerns, you can contact my mom Jennifer at 646-912-4099 or email her at [email protected] . All funds donated will be used towards therapies and interventions not covered by insurance. Please take a minute to sign my guest book!

Much Love,

Keira