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"Amelia"
How to Knock Down a Brick Wall according to ASK.com: “For easy demolition of a brick wall, first there is a need to organize your demolition equipment.” On January 12, 2012, I shared my post “Brick Walls” with my Wolf-Hirschhorn Syndrome family who then shared it with the world. As a community, we organized our […]
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I hear a lot of people say, “Oh where did the time go?” or “When did this happen?” when their children turn a certain age. I know I was guilty of this when the boys both entered Kindergarten and for Joey, Middle School. Today Amelia turns five and this is the furthest sentence from my […]
Continue Reading →Our family received word about a month ago that Amelia is officially approved for the kidney transplant. All of her specialists, and some we have only just met, have agreed that there is no medical reason for her not to have the transplant. I will donate my kidney when Amelia’s kidney function falls to about […]
Continue Reading →I just wanted to share with everyone our letter for the Spread the Word to End the Word Campaign. We were honored that the Special Olympics asked us to tell our story about how one word can impact a life. Thank you for all your support over these past several months. Dear Friends: Like any […]
Continue Reading →FOR IMMEDIATE RELEASE Tuesday, February 15, 2012 Joint Statement of the Rivera Family and The Children’s Hospital of Philadelphia In response to significant public interest surrounding the Amelia Rivera story, the Rivera Family and The Children’s Hospital of Philadelphia have issued the following joint statement. Philadelphia, PA – February 15, 2012 – Over the course […]
Continue Reading →Brief Update… Almost three weeks after our initial visit, we returned to CHOP to hear the hour long presentation about kidney transplants.The presenter discussed the risks for Amelia and the donor, and although they would be scary to any parent, there were no risks that raised any red flags that Amelia should not have the […]
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I put my hand up. “Stop talking for a minute. Did you just say that Amelia shouldn’t have the transplant done because she is mentally retarded. I am confused. Did you really just say that?”
Continue Reading →Just the facts for today: We saw nephrology and Mia is dong well. We asked the important question, “How long do we have until she needs a transplant?” Response: About six months to a year. We were happy with this news! We then met with head of transplant team. It did not go as well. […]
Continue Reading →I have asked on the list serve if any one could help with any information about kidney diseases and transplants, and although many people offered support, no one responded about actually going through a transplant. So I thought I would blog about our experiences to help others. And as usual, I am being selfish […]
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I cried on Sunday. I wept and sobbed and I couldn’t stop. I hadn’t cried like this in a long time. Not since the first three months after Amelia was born. I realize now that each day after her birth I was becoming stronger and understanding more about her and her syndrome. But I cried […]
Continue Reading →Prep: 37 Weeks Cook: A Lifetime Ingredients: Micro deletion and inversion of the 4th Chromosome One hundred and Eighty Pounds of two brothers Two fire breathing dragon parents Thousands of family and friends Directions: Prep a family of four for the arrival of a preemie size baby with an extra large attitude, a humongous […]
Continue Reading →I am sure all of you have been asked this question a thousand times when it comes to your WHS child. I know I have since the day Amelia was born. People will look at me, tilt their head, and ask, “How do you do it?” In the beginning, during the first year, I would pause […]
Continue Reading →Listen to the mustn’ts, child, listen to the don’ts, listen to the shouldn’ts, the impossibles, the won’ts, listen to the never haves, then listen close to me – anything can happen, child. Anything can be. Shel Silverstein The Dreaded IEP… I anticipated it for weeks, pretended it wasn’t coming, avoided talking about it with anyone […]
Continue Reading →I thought I would post my husband’s perspective on WHS. I know we don’t have a lot of daddies that post and he wanted to share his side of Mia’s story! “I’m Pregnant!” Pausing for brief moment, I carefully freeze because I am sure we just discussed yesterday who was going to go in […]
Continue Reading →We have taken Amelia to the shore twice this summer and the first time I swore we would never go back. I forgot so many important medical supplies that I swore we wouldn’t travel again. The heat was unbearable and Mia was miserable because she despises to sweat! But we decided to try it again […]
Continue Reading →I used to think the song “Fix You” was written just for me about Mia because I thought it was my responsibility to repair the damaged life she had been given. “Fix You” When you try your best, but you don’t succeed When you get what you want, but not what you need When you […]
Continue Reading →Wolf-Hirschhorn parents, family members, doctors and therapists are rising up and I LIKE IT. The crowd is getting motivated to produce change and that makes my little heart go “pitter-patter” with excitement. We are no longer willing to let outdated scientific studies with gloomy photographs of emotionless kids in corners, poor prognosis and all-encompassing phrases like […]
Continue Reading →Nathan and Joey It is amazing to see the difference between the way Nathan looks at Amelia and the way Joey looks at Amelia. I have no doubt they both love her. But Joey, being nine, knows there is something different about her. He often asks, “Will she walk? When will she talk? What is […]
Continue Reading →Although I have posted this on FB, I thought I would post this again here… Before we were able to take Amelia home from the NICU, we had a “team” meeting with her doctors. This meeting included general doctors, nurses, specialists, geneticists, social workers, and counselors. We were given a checklist of what she would […]
Continue Reading →I am hoping this works. I created a video of Mia’s first three months in the NICU and her first month at home. I am attaching the link. It is my first video using the movie maker program so I am sorry if there are mistakes as I am still learning! Enjoy!
Continue Reading →Hello! I am the mother to Amelia who was diagnosed with WHS at two days old. I live in New Jersey with my husband, and two other children, Joey and Nathan. I am a teacher and my husband is a real estate agent. All of the information I have ever learned about WHS has come […]
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