Kimmy's Fight Against ROHHAD

Timeline of Kimmy through the years. 

Keegan, Kimmy, and Luca.


Kimmy with her brothers Keegan and Luca.




When Kimmy’s ROHHAD Fight GoFundMe page began it was prior to Kimmy being diagnosed with ROHHAD, we helped to raise the money needed for Kimmy to see the doctors to get her diagnosed.  If you read on you will learn about Kimmy, about ROHHAD, and what Kimmy’s Fight is doing to help Kimmy, her family and ROHHAD. 

 

ROHHAD:  Rapid-onset Obesity with Hypothalamic dysfunction, Hypoventilation and Autonomic Dysregulation

With less than 100 known cases in the world ROHHAD is a newly discovered disease that can cause cardiorespiratory arrest and death.  ROHHAD presents sometime after 1.5 years of age, in otherwise healthy children. The rapid-onset weight gain is typically the beginning of the disease and it escalates from there.  Children with ROHHAD face many medical challenges including rapid weight gain, Hypothalamic Dysfunction, Behavior Problems, Tumors of Neural Crest Origin, Seizures, Severe Bradycardia, Central Hypoventilation, Support from an Artificial Ventilator, and potential Cardiac-respiratory Arrest.  The cause of ROHHAD is unknown and at the moment there is not a treatment for ROHHAD, ROHHAD is considered terminal.

 

 

Kimberly Ann is the first born child to Melanie and Luke, she was born on October 9, 2007 a beautiful little girl eager to take on the world.  The first 3 and a half years of her life Kimberly seemed like every other child, it was about this time that Kimberly's parents started noticing some changes in her, like rapid weight gain that came out of nowhere and an almost overnight personality change.  After taking her to her pediatrician and multiple specialist they brushed off the symptoms and told Melanie and Luke to watch what she was eating.  In the last 2 and a half years she has gained over 95 lbs, in the last 3 months alone she has put on 35 lbs, an astronomical amount of weight for a 7 year old girl.  Kimberly is on a Nutritionist recommended strict 1,100 calorie a day diet and regularly visits an Endocrinologist, but still there is a consistent and uncountable weight gain that no doctor has been able to explain or prevent.  Kimberly has Juvenile Idiopathic Arthritis that causes her severe pain in her joints. She has suffered seizures, constipation, bowel control problems, hair loss, facial tics, breathing issues, erratic sleep patterns, night terrors and hallucinatory dreams, constant severe pain in nearly every part of her body, projectile vomiting, unexplained fevers as well as unexplained drops in body temperature, she also has a grapefruit sized cortozoid deposit on the back of her neck. 

     All of these changes to one little girl's body and her parents were met with a brick wall when it came to diagnosing her, until April 2014 when her Pulmonologist diagnosed Kimberly with ROHHAD.  With that diagnosis came things no parent wants to hear, “there are no treatment options”, “they don’t know what causes it”, “ROHHAD is terminal”.  Kimberly’s parents refuse to accept that and began their own research on ROHHAD.  They found doctors who have had some success with experimental chemotherapy and this is where Kimberly and her family need your help.  Please help us help Kimmy by helping to raise money to get her to doctors that can give her hope and options, as well as help the family with all of Kimmy’s current medical expenses. 

In spite of all of Kimmy’s daily struggles and pains, her on average 12 doctors appointments a month and countless amount of the time spent in and out of the hospital, Kimmy is really no different than your average 8 year old girl.  She love’s One Direction and Taylor Swift, dancing around the living room with her brothers while singing along to every word of Shake It Off or Story of My Life.  She loves baseball and is looking forward to finally getting to go to her first professional Tampa Bay Rays game! Kimmy is one of those children that causes you to just be swept up in her smile, her infectious giggle has the ability to make every day a great day, her kindness knows no bounds and she is the first to do for others and to think of her brothers and cousins before herself.   Kimmy is a blessing to everyone that knows her and we stand strong by her side and fight with her every day!

Kimmy’s ROHHAD Fight also hopes to raise awareness and help get people informed about ROHHAD through fundraising efforts, social media campaigns, and word of mouth!

But the most important thing of all is prayers and positive thoughts, please include Kimmy, her parents Melanie and Luke and her little brothers Keegan and Luca in your prayers and thoughts daily.

Thank you for taking sometime out of your day to read a bit about Kimmy and her story, I challenge you to inform 5 people in the next week about Kimmy and ROHHAD!

 

 

          - Kimmy’s ROHHAD Fight!