Aug 22

What's Up Wednesday -- Alex

#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 14-year-old Alex from Cook Children's Medical Center. Like his sister, Maddy, Alex has mitochondrial disease; he also has been diagnosed with adrenal insufficiency, immune deficiency, dysautonomia, chronic intestinal pseudo-obstruction and pancreatitis. 

Due to these serious conditions, Alex’s care is very complex and ongoing. Medicaid has been vital to ensuring Alex has access to the care he needs, and that Cook Children’s has the resources it needs to treat Alex. Even though his medical needs make some activities complicated, he still enjoys playing video games, acting, golf, violin and his church youth group. You may remember Alex from his participation in this year’s Speak Now for Kids Family Advocacy Day.

So Alex… what’s up?

Aug 20

Medicaid Matters for Kids Mondays - Maddy

Speak Now for Kids is celebrating Medicaid’s 53rd birthday with blogs highlighting the importance of Medicaid in children’s access to health care. This week we spoke with Maddy’s mom, Ali. Maddy is a Speak Now for Kids Family Advocacy Day alum and current patient at the Cook Children’s Medical Center.

Like her big brother, Alex, Maddy has mitochondrial disease — she also struggles with immune deficiency and disaccharide deficiency. Mitochondrial disease is a serious condition without a cure — it requires lifelong medication and therapy.

Maddy’s medical home is Cook Children’s Medical Center, she’s received extensive intervention there since an early age. Even though my daughter gets tired and struggles with pain, she wants to do the same things as other kids. Maddy's disease causes her to have fatigue, and that impacts what activities we choose to do as a family and how long we can participate in different events. Maddy has been in therapy three times a week for most of her life, she also sees nine doctors on a regular basis.

Aug 15

What's Up Wednesday -- Lucas

#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 Lucas from MUSC Children’s Hospital. You may remember Lucas from his participation in this year’s Speak Now for Kids Family Advocacy Day.

Lucas is a charismatic, energetic and intelligent 11-year-old always proud to advocate for others. When Lucas was 7 years old, he accidentally knocked a pot of boiling water onto his face and shoulder, receiving second and third degree burns. He wants lawmakers to know that children’s hospitals are not just important for families with kids born in need of serious care — they are important for everyone.

So Lucas… what’s up?

Aug 13

Medicaid Matters for Kids Mondays - Luis

Speak Now for Kids is celebrating Medicaid’s 53rd birthday with blogs highlighting the importance of Medicaid in children’s access to health care. This week we spoke with Crissty — Luis’ mom — to revisit Luis, a Speak Now for Kids’ Family Advocacy Day alum and current patient at Children’s Health – Children’s Medical Center Dallas.

My son was diagnosed with a rare cancer of the retina at 6 months old. I was devastated when I first heard about the conditions and the procedures that Luis has to endure at such a young age. Luckily, the cancer was caught before it had spread. But to ensure his healthy future, doctors were forced to remove the affected eye. Following the surgery, Luis underwent four rounds of chemotherapy and speech therapy.

I can’t imagine what his life would be like without Medicaid. I probably wouldn’t be able to take him to see the specialist that diagnosed him with cancer — simply because I can’t cover the cost. Our family relies on Medicaid to keep him healthy, it’s there for any special needs he might have as a cancer-survivor and also for the normal preventative checkups all kids need. As a single mother, I have to work and take care of Luis at the same time. I wouldn’t be able to afford Luis’ treatment and checkups on my own.

Aug 13

Medicaid Matters for Kids Mondays - Skylar

Speak Now for Kids is celebrating Medicaid’s 53rd birthday with blogs highlighting the importance of Medicaid in children’s access to health care. This week we spoke with Skylar’s mom, Lindsey. Skylar is a Speak Now for Kids Family Advocacy Day alum and current patient at the Arkansas Children’s Hospital.

My daughter, Skylar, was born with a brain abnormality — this has impacted our family in many ways. She requires 24-hour care and assistance for all of her daily activities. She also needs a wheelchair and this heavily restricts where we go and what we do on a daily basis. She has multiple doctor appointments a month, and she still needs medical treatments at home when she’s not at the hospital.

Skylar is on 10-12 medications a day, and also requires respiration treatments, oxygen and feeding tubes, mobility equipment and more. Even though my husband and I have full-time jobs, we still can’t afford the care and equipment that Skylar needs with our private insurance alone.

Aug 08

What's Up Wednesday -- Ava

#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 15-year-old Ava.

You may remember Ava from her participation in this year’s Speak Now for Kids Family Advocacy Day. For those who know the happy and confident 15-year-old, it may come as a surprise that she was once a short-tempered little girl. Ava was suffering through headaches nearly every day of her life and occasional nausea. At age 8, Ava was diagnosed with juvenile pilocytic astrocytoma, a rare, often benign, brain tumor that strikes in childhood.

Today, while Ava is headache-free, she continues to work on her mobility and processing speed with the help of Mt. Washington Pediatric Hospital’s staff of physical therapists, occupational therapists and child life therapists (the final being her favorite because they usually play music and sing with her during therapy).

So Ava… what’s up?

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.

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