Team Nevaeh Lynn is back and ready to go for it's 3rd year!! But with a twist. We are now team BFFs with Nevaeh Lynn & Alyssa Marie ( Brave Fierce Friends ) this year as Nevaeh's best friend is joining forces with her.
Alyssa was recently diagnosed with systemic juvenile idiopathic arthritis ( SJIA) and macrophage activation syndrome (MAS)(an uncommon but potentially life-threatening complication of SIJA) and spent alot of time at Lurie Children's these past few months. The word “idiopathic” in systemic juvenile idiopathic arthritis means the cause isn't known. Although that’s true, researchers have made great progress in understanding many aspects of SJIA, including how it differs from other types of juvenile arthritis. They also have learned what chemicals in the body trigger inflammation, which has led to targeted therapeutic approaches to the treatment of the disease. Unlike other forms of juvenile idiopathic arthritis (JIA) in which most children have arthritis as their main problem, children with SJIA typically also have systemic symptoms—problems throughout the body, including fever, rash, and inflammation of organs such as the liver or spleen. Arthritis may not occur until weeks or months later and can persist long after the fever and other systemic symptoms have disappeared.
These girls have an amazing bond and support each other in so many ways.
Nevaeh has had alot of medical issues since she was 18 months old. She started her journey with Luries a couple years ago due to having Chiari malformation, a condition in which brain tissue extends into her spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward pushing on the spine. During Nevaeh's visit with Dr. Tolmita, her neurosurgeon, he discovered she had a tethered spinal cord which had caused alot of complications with her bladder, kidneys and GI track ( this syndrome is a neurological disorder caused by tissue attachments that limit the movement of the spinal cord within the spinal column. These attachments cause an abnormal stretching of the spinal cord. This syndrome is closely associated with spina bifida.) In March of 2017 Nevaeh had two spinal surgeries done on the same day. Although surgery was a success she still has alot of prolonged side effects, as well as nerve damage and pain. Nevaeh sees several specialists and departments at Luries.
Nevaeh started her team after seeing posters up at the hospital while we were there for her post op appointments. She then said "Mommy i may not be able to run just yet but I can walk and I want to help other kids like me that needs these doctors". From that second on that is what we have been doing. No matter is she is having a good day or bad, Nevaeh is always wanting to help others because she can relate/ sympathize and this is a huge reason why she is always there to support Alyssa in any way she can even if they are just laying around napping!!!Make a difference in the lives of nearly 209,000 patients treated at Ann & Robert H. Lurie Children's Hospital of Chicago each year. Support my efforts for the 2019 Move for Kids, by making a gift today. Every dollar raised means a brighter and healthier future for our children.
Here are just a few ways your donations could help:
$35 can provide a comfort item for a premature infant to ensure the smallest and most fragile babies heal and grow faster.
$60 can help provide inpatient entertainment and distractions to help patients reduce stress and have fun while undergoing treatment.
$120 can help provide small lab supplies for one of the hospital's clinical trials to ensure our children have access to the latest treatments and therapies.
$240 can help provide supplies for the Lurie Children's classroom so that children in the hospital can continue their education.
All donations are tax-deductible and will be acknowledged by Lurie Children's Foundation.
On behalf of the patients and families of Lurie Children's, thank you for your support!
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