May 24

2016 Family Advocacy Day Hero: Sophia

rsz_blank_childrens_hospital_karwal_sophia_photo.jpgWith an always present smile on her face, Sophia defies all odds. Delivered early due to intrauterine growth restriction (IUGR), a condition in which an unborn baby is smaller than she should be because she is not growing at a normal rate inside the womb, Sophia was eventually diagnosed with cerebral palsy. In addition, she carries a host of other diagnoses such as right hemiplegia, microcephaly and developmental delays. However, this did not stop Sophia from doing all that she was meant to do.


May 24

2016 Family Advocacy Day Hero: Berne

rsz_university_of_iowa_childrens_hospital_denison_berne_photo.jpgBerne and his twin sister Maren, who both have cystic fibrosis, had a difficult start in life. Born prematurely, due to an intestinal obstruction, Berne has struggled with weight gain and bowel obstructions. To monitor his health and keep up with his treatments, Berne has to visit University of Iowa Children's Hospital at least six times a year.

May 23

2016 Speak Now for Kids Family Advocacy Day Hero: Maddy

rsz_childrens_national_medical_system_garrett_madison_photo1.jpgFrom a very early age, Madison "Maddy" possessed a very strong character and brought lots of laughter and smiles to just about everyone that she met. At the age of 3, Madison embarked on a life changing journey that was also beyond her years, a battle with cancer. After a series of tests she was diagnosed with stage 4 high risk neuroblastoma. Further bone scans revealed that the cancer was not only in her abdomen, but also in her lower spine, her shoulders and her hips and she was given only a 30 percent chance at survival.

May 21

2016 Family Advocacy Day Hero – Arielle

rsz_boston_childrens_hospital_beaulieu_arielle_photo.jpgArielle was born seemingly healthy in 2013 but a CT scan eight days after her birth revealed an enormous brain tumor. Her parents were told that the mass was untreatable and to take her home under hospice care. Unsatisfied with this prognosis, they turned to Boston Children’s Hospital for a second lifesaving opinion.

May 20

2016 Family Advocacy Day Hero: Miles

rsz_childrens_of_alabama_brown_miles_photo.jpgDiagnosed with rheumatoid arthritis at just 3 years of age, Miles had limited mobility and lived in endless pain. On the worst days, he would have to use a wheelchair at school. Despite this, he was always brave and upbeat. Widely considered an “older person’s disease” rheumatoid arthritis is the most common type of arthritis in children under the age of 17.

May 20

2016 Family Advocacy Day Hero: Dayson


Dayson was only three weeks old when he was diagnosed with pulmonary atresia, asthma and laryngomalacia. This complex diagnosis required Dayson to have a tracheostomy, requiring constant nursing care. Having access to Yale-New Haven Children’s Hospital, and the extra supportive services that are specific to children, helped Dayson and his family cope with the extraordinary situation of his complex medical care needs.

May 18

2016 Family Advocacy Day Hero – Paxton

Paxton’s strong personality became very handy after he was diagnosed with stage 4 Burkitt’s lymphoma leukemia at the age of 5. Showing cancer who’s boss, Paxton was described as having unshakable strength and perseverance while inspiring those around him.

May 17

2016 Family Advocacy Day Hero: Peyton

rsz_akron_childrens_hospital_domers_peyton_photo.jpgPeyton was just 2-years-old when she was diagnosed with juvenile rheumatoid arthritis, uveitis and asthma. Since then she logged multiple emergency department visits for numerous illnesses, as well as 26 visits to a specialist within the last year alone. However, being the brave little girl she is, Peyton pushes through the pain to keep up with her peers.

May 16

2016 Family Advocacy Day Hero – Jacob

rsz_wolfson_childrens_hospital_lopez_jacob_photo.jpgIn April 2015, Jacob, then 7-years old, was in a terrible car crash, suffering severe injuries that included a collapsed lung, bowel perforations, a traumatic brain injury, a broken vertebrae and a severed spinal cord. After emergency surgery, Jacob was admitted to the Pediatric Intensive Care Unit at Wolfson Children’s Hospital. There, his pediatric neurosurgeon broke the news to mom Maria and stepdad Bill that their little boy would be paralyzed from the waist down. Although his paralysis was a major concern, they were more worried about Jacob’s traumatic brain injury, which he has overcome amazingly well.

May 07

Break the Stigma: A Mother’s Story (Part 3)

In this final segment of Break the Stigma, Kathy continues to advocate for Max’s in-school evaluation while preparing him for high school. While helping Max, Kathy’s daughter battles with anxiety and depression after being diagnosed with a chronic illness.

At the suggestion of Mayo Clinic and Max’s therapist, I turned a written request into the school for Max to be evaluated for a 504 plan, which would accommodate Max’s learning needs within the general school curriculum. When I attended the meeting to discuss the evaluation, I was told that the school would not evaluate Max because he had to be at school five full days in a row so they could witness his anxiety. I had documentation from the Mayo Clinic, his primary care doctor, and his therapist to support the need for the 504. I cried that last 10 minutes of the meeting and was unable to speak because of the things that were said about my son and me.

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