Aug 01

What's Up Wednesday -- Gabe

#WhatsUpWednesday is our chance to hear from the teens and young adults who are involved with the Speak Now for Kids community. This week’s post will focus on 13-year-old Gabe.

You may remember Gabe from his participation in this year’s Speak Now for Kids Family Advocacy Day. Gabe, who had his first surgery when he was 9 days old, continues to travel to his medical home, Children's Hospital of Wisconsin, several times a year for regular checkups, procedures and for any emergent health issues. 

So Gabe… what’s up?

What my children’s hospital means to me My hospital means my life, I would not be here without Children's Hospital of Wisconsin

What I want the world to know about my condition I received nearly 50 medical procedures, including two open-heart surgeries, to treat double outlet right ventricle and hypoplastic left ventricle — congenital heart defects. My condition is very serious and affects 1 in 10,000 kids. 

What makes me unique Despite my medical challenges, I still see the good in the world. 

What have I overcome Multiple surgeries and hospital stays. 

Jul 30

Happy 53rd Birthday, Medicaid!

Wow, how the years flew by! On July 30, 1965, Medicaid was signed into law — and today, it helps about 37 million children a year get the care they need. 

So, why is Medicaid important to children?  

  • Medicaid caters to kids. Medicaid provides kids with access to comprehensive, pediatric-specific benefits that are critical to their healthy development.
  • Medicaid covers children who need care the most. Medicaid is a vital lifeline providing affordable coverage to children in low-income families and to children with special health care needs.
  • Medicaid is a smart investment in kids. While children account for 40 percent of all Medicaid beneficiaries, they account for less than 20 percent of program spending. This relatively small amount of funding goes a long way, helping kids grow up healthy and better able to achieve their dreams in adulthood.

What amazing achievements, right? Preserving a strong Medicaid program is essential to ensure that all kids have coverage and access to care.

So for Medicaid’s 53rd birthday, let’s urge Congress to protect Medicaid for the children that depend on it to lead healthy and productive lives. If you haven’t done so, sign and share this pledge to make children’s health a national priority.

Join us on social media using #SpeakNowforKids throughout August and share why Medicaid matters to you and your family. Don’t forget to wish Medicaid a happy birthday (and many more to come)!

Jul 23

Medicaid Matters for Kids Mondays - Jude

Speak Now for Kids is celebrating Medicaid Matters for Kids Mondays with posts highlighting the importance of Medicaid in children’s access to health care. This week we revisit Jude, a Speak Now for Kid’s Family Advocacy Day alum and current patient at the Colorado Children’s Hospital.

Jude seems like your typical first grader. He likes to have fun on the playground, loves school, and is an avid reader, a jokester and a keen video gamer.

But Jude is anything but typical; he has been diagnosed with hydrocephaly, epilepsy, autism, brain tumors and moyamoya — a rare condition associated with neurofibromatosis type 1 (NF1), in which arteries at the base of the brain become blocked resulting in a high risk for stroke.

Jul 05

Laura's Story

Our daughter, Laura, had her first myoclonic seizure at 14 months old. We were living in Germany at the time — after the first seizure, we rushed to a local hospital to get her admitted.

We soon learned that the hospital did not perform the test she needed — an EEG — during the weekend. She had seizure after seizure, nearly 100 in total, without medication while we waited for her test.

Once we were able to get her the testing she needed, our daughter was diagnosed with Angelman syndrome — a genetic disorder that leads to delayed development, severe speech impairment, and problems with moving and balance. While we had phenomenal military doctors in Germany, there was no neurologist on base. I ultimately left with our daughters to seek better treatment for Laura in the US.

Jul 02

Annalyse's Story

My daughter, Annalyse, has cerebral palsy, subglottic stenosis, tracheal bronchial malacia, metabolic bonedisease, ADHD and developmental delays. Annalyse and her twin brother, Seth, were born at 25 weeks. We became their foster parents when they were around 2 months old. We knew Annalyse would have challenges living a normal life, but we were ready to help her live her best life.

Annalyse’s medical challenges impact our family more than I realized. We don't travel often since we have to stay close to a facility that can treat her. It’s complicated to take Annalyse to typical places like the beach. She can’t participate in activities with a lot of coordination and endurance due to her bone disease. We try our best to plan trips that she can be a part of, but this has definitely limited the experiences in her brothers’ lives.

We currently travel between two hospitals to receive care, Walter Reed in Bethesda, Maryland, and Cincinnati Children's Hospital Medical Center in Ohio. My husband has to take leave from the military every time Annalyse needs care in Ohio. We plan to travel to Ohio more often in the next few months since the doctors are increasing the frequency of her medical procedures.

Jun 29

2018 Family Advocacy Day Recap

This week, nearly 50 child patients and their families made over 150 visits with members of Congress during our 14th annual Speak Now for Kids Family Advocacy Day. Some of the families most impacted by children’s health care policy shared their personal stories with lawmakers and media to emphasize the importance of investing in children’s health care.

Jun 27

Meet Maddy: 2018 Family Advocacy Day Champion!

Maddy is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Maddy will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.

From a very early age, Madison — lovingly referred to as Maddy — possessed a very strong character and brought lots of laughter and smiles not only to her household but to just about everyone she met. At the age of 3, she embarked on a life changing journey that was also beyond her years — a battle with cancer.

Maddy had been experiencing some discomfort in her right leg and stomach, and her stomach appeared to protrude. 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 — she was given only a 30 percent chance at survival.

Jun 26

Meet Asher and Quinn: 2018 Family Advocacy Day Champion

Asher and Quinn are participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Asher and Quinn will share information about their health journey and the importance of children’s health care with members of Congress. Below is their story.

Asher has a curious mind. This 7-year-old boy does not let his medical challenges stop him from being sociable and outgoing. When he’s not conducting science experiments, you can find him with his friends on the playground or exploring the local parks.

Asher was diagnosed at birth with heterotaxy syndrome, multiple congenital heart defects, hydrocephalus, primary ciliary dyskinesia and seizure disorder. He has had extensive treatments at Maria Fareri Children’s Hospital, including open-heart surgery, 11 brain surgeries and intestinal surgery.

Jun 25

Meet Skylar: 2018 Family Advocacy Day Champion

Skylar is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Skylar will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.

Skylar is an inspiration. Her parents were once told that she would not live past her first year, but today, Skylar is a 12-year-old girl excited to journey to the nation’s capital and advocate for children’s health.

Skylar was born with bilateral open-lip schizencehpaly — a brain abnormality. She first received treatment at Arkansas Children’s Hospital when she was 3 months old. While she was initially treated for seizures resulting from her brain abnormality, she is now treated for other diagnoses that have resulted from her condition.

Jun 24

Meet Mae: 2018 Family Advocacy Day Champion

Mae is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Mae will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.

Mae is a social butterfly. She has an uplifting personality and loves to talk to everyone she meets!

You might not guess it, but this bold little girl was born with childhood interstitial lung disease and spent her first 20 months in a hospital.

Franciscan Children’s not only provided medical and respiratory care, it trained and empowered her family to manage her needs independently. Mae enjoyed occupational therapy, speech therapy and music therapy from her favorite therapists at the hospital.

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