Neurofibromatosis can be very debilitating. As parents, we walk a journey that leads us to an unknown path daily. Like many others who endure this horrific disorder.
Cafe Alate' spots started at 3 months young. We took Keara to see her pediatrician. The doctor did an exam and referred us to Boston Children's Hospital.
What? What is neurofibromatosis? Is this a disease or disorder? Does it go away? Is there treatment?
We were beside our selves as we never heard of this and needed to familiarize ourselves with as much information as possible.
For nine months it was traumatizing for all of our family, including our other three children.
When Keara was one her neurologist did a full diagnosis telling us Keara, has neurofibromatosis 1. She referred us immediately to one amazing eye doctor. Keara, was diagnosed with optic nerve glioma. (Non cancerous) These types of tumors can become malignant in the central and peripheral nervous system.
This has not grown (we are so grateful) . Keara is checked every 6 months and has visual fields, to keep a close watch.
When Keara was 4 years young, she under went an MRI of the brain and spine.
Keara has 14 brain tumors and 12 tumors near the cervical spine as well as a 5 cm tumor on the sciatica nerve. Chest walls, intestines and many other areas.
MRI is done to monitor for any growth.
In June of 2018, Keara, goes in for her yearly check up with her neurologist .
There is two very stressful endurance to wait for. Keara waking up from anesthesia and waiting for the outcome.
Between Massachusetts General Hospital and Boston Children's Hospital , Keara sees 15 doctors.
We need to find the unknown cure.
This picture holds a special place in our hearts. This is the day we found a café Alate' spot and thought it was a birth mark.
Keara had her first EEG at our home for 72 hours.
Keara was having seizures. Her brother Kevin (Keva) and sister-in-law Carla helped her through this journey with fun ribbons and many laughs. Many others sent beautiful gifts and loving thoughts.
We are so very proud as we taught Keara, it's not about winning. Life is about being happy and enjoying what you are doing from your heart.
Keara was in a completion in September of 2016 and won 1st place. Her heart was filled with more joy being around others than competing.
Keara started receiving IVIG infusions when she was four years young.
Our journey first started at Boston Children's Hospital at four years old. Frequency of the visits increased over the years now treatments occur every three weeks.
Keara now receives these treatments right in our home with many special ivig nurses.
Keara was 7 years young and needed surgery on her right foot.
The first surgery consisted of a titanium screw to hold that particular bone together. This was also going to help Keara walk without tripping over her own two feet. We were told after 10 weeks with physical therapy, she was getting her left foot done.
Our Journey took off different than we expected.
We were devastated as Keara, had fevers the day after surgery. Something was not right and we took her back in. The doctor wanted to wait to see if her body would accept the foreign titanium screw. After ten long weeks of her suffering in pain, high fevers, and not being able to move off the couch. Keara, was not mobile.
Another surgery to remove the titanium screw. This was the hardest on Keara, was in severe pain, her muscles were weak.
It took over 3 months of physical therapy coming to our home 3 times a week to work with Keara.
Christmas was a few days away and Keara hopped and crawled to open her gifts. Even though this was so devastating for her, she smiled and took each day like a trooper.
Needless to say because of her immune deficiency, she could not go fourth that way. We started another journey at Boston Children's with orthotics.
Keara (KJ), you are beautiful inside and out. A warrior child that shows us everyday just how important it is to be in the moment.
We love you to the moon and back and beyond our child. You are loved by so many.
Mama & Daddy <3 <3
Being parents of a child with NF1, we definitely learned that each day is a gift. Our motto: if your feet hit the floor, "Today is a good day".
Our strive, strength, and will has been learned from our little girl. There is never a dull moment in our home. We never no from one day to the next, but we do know that a cure needs to be found. Getting the awareness around our world, is the most important goal we strive on.
Please read about Neurofibromatosis at the most credible web pages. This is how we pay life forward with awareness.
We strive, will never give up, and will NEVER LET GO!!!
KJ's Journey living with Neurofibromatosis disorder and immune disorder
Iron Stone Farm , Andover, MA. has been a huge success with Keara. Fantastic for gross motor, balance, and strengthening.
We have to thank her pediatrician for reaching and finding a happy place within Keara's heart. Her passion is unexplainable when it comes to horses.
Keara's Journey Living With Neurofibromatosis
My learning environment is in my home with a tutor, physical therapist, occupational therapist, etc.
They all surround me with happiness, love, and the best learning environment possible. Special thank you to the Barron Elementary School district for making this all possible.
I also skype with my class at Barron School.
Our dog Angel helps Keara get through every IVIG never leaving her side.
What a love button to us all <3
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