Jorge (16) is a loved, positive, resilient teenager, he was diagnosed with Osteosarcoma (Bone cancer) June 28 2017 , he had surgery in Sept 2017. He follow MAP until February 2018 . he enter in remission.Sadly June 21st we receive the news that his cancer is back he had surgery June 27th 2018 founding 1 Osteosarcoma nodule. July 23th 2018 he have surgery to take out another Osteosarcoma nodule. October 22nd the day Oncologist told us that Jorge sadly have a tumor of 7cm in his chest wall and 3 little ones in the lungs. He was listed in a trial that started 11/9/18 Please pray for complete healing for my son. We have faith like a rock that everything will be fine. #JorgeStrong love play #Fortnite , Favorite band is #TwentyOnesPilots and he love receive cards, #BIG FAN of #Starwars#Doom#Bills#BoiseBroncos .
Oh little miss Mara…you were so excited to meet your mommy and daddy you came early. You were perfect in every way. You lived almost two hours so your mommy and daddy could feel your breath, and kiss your warm body. You showed them strength and love they had never witnessed before. You are loved…2/14/19, 4:12pm, 1 pound, 11″
Hi everyone! I am Addison’s mommy. She is an amazing little girl and I am so very blessed to have her in my life. Here is a little bit of what we have in our life each day and more importantly what Addy faces every day.
Addy was born premature October 06, 2009 with many challenges to bare but has a spirit that shines her God given light. At the time we only knew she had a very mild case of scoliosis but little did we know it was about to get a lot more complicated and painful from here on out. It seemed like we would get educated enough with one diagnosis just for another one to be added to Addy’s list of diagnosis or as we call them, Addy’s super powers!
She was born with a rare chromosome disease called 22q11.2 microduplication syndrome and from there is where all her diagnosis started coming in. Here’s a list of our little hero’s battles she continues to fight every day!
Severe neuromuscular scoliosis with a 97 degree curve in her back which she was placed on oxygen and Hospice for, a couple months ago, as it is starting to crush her lungs and organs and her heart is stressed. The scoliosis continues to progress in growth in curving and twisting leaving her in a lot of pain but she still smiles through it most days
Multiple butterfly and hemi vertebra’s
Missing 2 ribs
ASD (Atrial Septal Defect) hole in the heart
Kidney Reflux (born with only one kidney and that one is enlarged
Severe epilepsy which causes her to stop breathing at times with grand mal seizures but has recently been placed on cannabis oil through the state of Idaho and it has done miracles with her
Optic Nerve Atrophy
Cortical Vision Impairment
Tethered Cord (Addy had surgery on this once at Primary Children’s and it almost took her life. What was suppose to be an overnight stay turned into almost a month stay with acute pain care team taking care of her)
Epistaxis (nose bleeds) she gets these with seizures due to pressure when seizing
Agenesis of the Corpus Callosum
Small ear canals
Addy is unable to eat but gets her supplement through bottle feeding (Vanilla pediasure warmed up and ice cold water) She definitely knows what she likes. She also learned to hold her own bottle about two years ago!
She has a weakened immune system! Addy has numerous doctor visits , procedures, hospital visits, ambulance rides, and many sleepless nights in the ER/hospitals. Her life expectancy has always varied by doctor but anywhere from age 2 to 3 years old and with not much inspiration as to the expectancy on what she would ever be able to achieve. Addy is now the lucky number 7 years old and doing what most in the medical world said she would never be able to do. Addy was never expected to do many of the simple things we take for granted every day like show emotion, move her legs and arms, talk, just to name a few. Although Addy is unable to do many things like sit up, walk, talk on cue, eat, and we don’t know what she perceives through her beautiful blue eyes. Through love, hope, faith, Addy’s will, and the Grace of God what Addy is and can do, can only be explained as a miracle. Addy does not have a day without some pain and is unable to tell me where it hurts but her spirit and personality shine. What Addy is and can do is so much more than ever expected and I am so proud the Lord trusted me to take care of her. Although exhausting, heartbreaking and very painful, I have to believe that she is the Lords light and has provided purpose and meaning to me and everyone that knows her. When life gets me down I try to think about all the things that Addy is and does and then I realize I have no reason to complain. Addy was never expected to have hair (look at her beautiful hair), she was never expected to have teeth (she has a whole mouthful and is in the Zero Cavity Club at the dentist office), she can smile, laughs, cries, pouts, kicks her feet, moves her arms, holds toys, pushes buttons, pulls toys, rolls over, attempts to crawl, blows kisses, says momma, nana, ouch, hi, oink, sissy, Deja (her sissy’s name), uh oh, hug and heeey. Her words are not always on cue, she struggles to get rolled over and her kisses take a minute to get out but she eventually gets it done. Her 9 year old sister is her biggest fan and through her eyes Addy is perfect. They have a close bond that would just bring tears to your eyes. If her sister receives a phone call she never leaves Addy out…she reminds everyone on the phone that they must talk to Addy. She tells us that she can feel Addy’s heart and what it’s saying. I am a single mother with an education but decided to quit my job and schooling to attend to her numerous needs and provide her the best care and love every minute of her life here on earth. Simply said she needs me and I am told by many, “I am the air she breathes”. I am not certain I am that great but I love her beyond words and want to be that for her as she is my life. She has taught me so much in life and about life. She is very much loved and has a lot of love to give back. To know her is to love her. Some fun things to know about Addy are she loves music! Not just any type of music but hip hop and rap are her favorite. Her number one favorite is Pitbull. Next to me and her sister music is her calm in her storm and is medicine to her for whatever reason 🙂 Addy has learned to fake laugh just to make us laugh. 🙂 She loves to dance, being dipped upside down and loves to dance in the wind with her beautiful hair blowing in the wind. She extends her arms like she can fly. 🙂. She is an exceptional little girl and I feel very blessed every day that God has entrusted me with such a precious and fragile life, one of his very own angels! Thank you to everyone for the love, prayers, and support. God bless you all!! #teamADDY
Here is a link to her facebook page for anyone wanting to follow Miss Addy on her life journey and add a little sunshine to your day:
You can also search her by name:
Addison Capri Berria
When I get these phone calls, it is never easy. Never one way to approach, never the same story. This family let me into their very private evening. We talked, cried, and even laughed. You have to! Please read their story and keep this family in your thoughts and prayers. They are hurting…
Chris and I found out we were pregnant on June 10, 2016 while on vacation for our birthdays. We had been trying to get pregnant since February. Every month that passed that I had received my period made us sad because we wanted to start our family. The morning of June 10th, I was one day late for my period so I took a pregnancy test around 730. I was scared to look at the results because they have been negative for months prior. It said pregnant, I cried because I was so happy and excited. I went back to the room where Chris was still sleeping and battled with myself if I wanted to wake him up or let him sleep. I decided to let him sleep. My dad came home and woke us up because we had plans. Chris woke up and I told him to close his eyes and I have his birthday present. I took both his hands and put one on my stomach and had him hold the test with the other. He was extremely happy and cried. We had finally started our family together. Later that day we told our family and closest friends. We didn’t want to tell many people because we had already been told we were going to have a high risk pregnancy. We had our first ultrasound on July 14, 2016 where it showed the tiniest and cutest little blob! It became real to us by then because we had seen our baby! Once the pregnancy really took off I had awful morning sickness and weakness. For a good 6-7 weeks I was unable to eat anything and had to do ensure shakes to get something in me. Chris was constantly supportive and helped anyway he could with the morning sickness. It was around 4 1/2 months when I finally was able to start eating again with only a few throw up sessions. When Penelope was around 17 weeks we tried to see what we were having because we’re impatient . We went in for the ultrasound and saw how much the baby has grown. We were both feeling lucky that we would find out….but our sweet little one really liked to play with the umbilical cord so we couldn’t get a good look. Our Midwife said she was leaning towards a girl just because of what she saw. We walked out of that appointment with no clear answer on what our little one was. We still were both feeling a boy (had that feeling since we found out we were expecting). We had our 2nd trimester ultrasound scheduled for October 5, 2016 (3 long weeks we had to wait to see our little one again and hopefully find out what we were having). When our little one was about 18 weeks I felt her move for the first time, that hands down was the best feeling in the world, Chris finally was able to feel her frequently around 21 weeks. The afternoon of October 5th finally came around and we couldn’t have been more excited to see our baby and find out what we were having…..BUT once again hands and feet were blocking everything. We got to look at our baby from top to bottom and inside out. Seeing how much our baby has grown made us so happy and seeing her move around was amazing. The ultrasound tech said she was 80% sure we were having a girl. Chris and I decided that with our Midwife thinking girl and the tech saying 80% girl we had our gender. Chris had left back to work after the ultrasound before the doctor came in and talked about the pictures. Little did we know our entire world was going to come crashing around our little family. The doctor came in and told me he had concerns about our Penelope. What the ultrasound pictures showed was: extra tissue on the back of the neck (normal is 5mm ours was 7.4mm), cleft palate, abnormal heart (it was not chambered correctly and was missing a flap to help blood flow), club feet, missing a cholera plexus (part of the brain crucial for development), and they weren’t seeing a clear separation of hemispheres. Her head was also measuring at 16wks 6days while her body was measuring at 18wks 6days, we were supposed to be measuring at 20 weeks. I immediately called Chris and broke down. We opted out of doing genetic testing earlier on in the pregnancy because we thought of it as interfering with God’s plan. After the results of the ultrasound we went ahead and did a blood test on October 7, 2016 because the doctors thought it was either trisomy 21 (Down Syndrome), trisomy 18 (Edwards Syndrome), or trisomy 13 (Patau Syndrome). They were thinning she had a trisomy abnormality because of the extra tissue, brain abnormalities, and birth defects. Chris and I waited for the results and has many talks about what we were ok with as a family. We decided that having a child with special needs was ok with us, we just wanted to have a child that was going to be able to: run, play, laugh, and be a kid. We did our research on what the 3 possibilities were and decided that we will do anything and everything to care for our baby girl. One long week went by and we received the blood results back (where it confirmed we were having a baby girl) but it did not confirm what was going on with her. The three trisomy disorders they tested for came back negative. However, the blood test showed a deletion on one of the number 13 chromosome. We were crushed that the blood test found something that was wrong with our perfect baby and that the doctors were unsure what that meant exactly. The research that was given to us by the doctors said that all of the signs she was showing matches up with a deletion. I was against getting an amnio done because of the risks but since we still did not know what was going on with our daughter I got an amnio done on October 17, 2016. Prior to my amnio we did another ultrasound and found that there was a little more defined separation of her brain but not near where it should be to be “functional” and that instead of having 4 normal ventricles in her brain…she had 3. I was told that day our daughter would not make it to high school. I went ahead and did the amnio holding out for any possibly hope that everything was wrong. While we waited for the results I had an appointment with a pediatric cardiologist, where he looked at her heart and found the flap that was missing but said it was very faint and weak. He also informed me that she had an abnormally large hole in her heart. Our doctors told us that while we wait for the results we need to talk about every possibly outcome and what we are doing to do. One of those hard conversations we were told to have was about termination of our pregnancy. This to me was not an option because I still was not comprehending what was going on. Chris and I talked about everything and decided that if our baby girl was not going to be able to have a childhood and life she should have termination was best for her. We still waited for the amnio results. Our doctors told us legally in Idaho we have until 24 weeks to terminate a pregnancy. We got the amnio results back October 26th and 27th. Where it showed all of her chromosome fine except for one of her number 13. They confirmed the deletion on the Q arm (the whole Q arm was practically missing). I asked what this meant and my Midwife said that I more than likely will not make it to term with Penelope and even if I did she would not make it outside of the womb for long, they had diagnosed her with Alobar Holoprosencephaly (one of the most sever brain abnormalities making her not viable). Chris and I had the hardest decision of our lives to make…and we made the decision to terminate our pregnancy because that is what’s best for our daughter. We got referred to another hospital where that doctor confirmed everything and said I would not make it to term with her. The Pediatric family grief counselor suggested we go on a baby bucket list weekend with her. We took her to Boo at the Zoo, because we would have taken her to the zoo all of the time and that’s were we had our first date. We took her out to eat, took her to the Rose Garden and picked her some roses and did a quick maternity shoot. We took her shopping and bought her an elegant white dress, books, a stuffed bunny, blanket, and baby book. On November 1, 2016 I started the prescription to induce labor. I felt the effects of the medication immediately and felt the contractions start, we were terrified of this. It was about 6am on November 2, 2016 when I told Chris it was time to go. I made that decision because my contractions had worsen and I couldn’t stand up straight. We get to the hospital and are immediately surround with love and support. We checked my cervix around 730 and I was 50% soften but no dilation. I got my epidural because I was in extreme pain. It was around 3pm when the doctors decided to break my water because I was only 1cm dilated. Around 5pm the doctor came in and checked me and told me it was time to start pushing. Around 530pm the catheter and everything else was taken out, a nursing team, and a comfort care team was in the room. With Chris by my side I started pushing. A little before 6pm I had delivered the most beautiful little girl in the world, and Chris has cut her chord. There was a chance that she would be alive when she came out (and that’s what we were hoping for)….but sadly she had passed. Chris and I were very very saddened that she had passed before being delivered but an odd sense of happy came over us that we were holding our daughter. She weighed 15.4oz and was 10″ long. As we held our Penelope we cried and cried and kissed her. She was swaddled when she was handed to us we kept her swaddled for a while then Chris and I were ready to fully look her over. We uncovered her where she was even more perfect to us. We saw the extra tissue, you can tell there was fluid around the brain, and her clubbed feet. But she was still the most perfect and beautiful girl in the world. We invited our family in to come meet her and they agreed she was precious! We got her feet and hand prints and got her dressed in the most beautiful white dress we had bought for her. For the next 21 hours we held her, played with her, cuddled her, and gave her lots of kisses and love. We read to her multiple times, rocked her in the bassinet, laid her down with us, took lot of pictures of her. It was 215pm on November 3, 2016 when the nurses came in to get her so she could be escorted to the morgue to have her feet and hand castings done before the crematorium came to get her. Seeing her get wheeled off was not easy at all. It still doesn’t feel real. As first time parents this was by far the worst and hardest thing we have ever had to do.
-Chris and Lyndsi Lyndsi Tacke
…living everyday afterwards…I spent the evening of June 9th with this sweet family. Deidrah & Ryan were 34 weeks pregnant, family in town for baby Sawyer’s baby shower and then the worst nightmare came true…Deidrah hadn’t felt Sawyer move. She went to the hospital and baby Sawyer no longer had a heartbeat. With broken hearts, she had to be prepped to deliver. I have to say watching Deidrah go through natural labor, knowing the outcome, the pain, the heartache…I witnessed a true hero. Deidrah was surrounded by her husband and sisters through it all. The love in that room was immeasurable. Please keep this family in your thoughts and prayers…they have a long road ahead of them. Thank you Deidrah & Ryan for allowing me to capture such a personal experience. I hope all the images will help you in remembering your beautiful baby girl, Sawyer.
We are the All American Family of four. The four of us are tight knit, loving the outdoors, history and travel. Road trips are our specialty, covering most of the Western United States by car, and even hitting spots on the East coast. Last fall, our oldest, Tyler, started to experience leg pain. He had been growing and so we assumed the leg pains were growing pains, as I remember experiencing as a kid. After a few weeks, it became obvious that something wasn’t quite right. We were referred to a pediatric orthopedic doctor.
Tyler was scheduled for an MRI, when our life changed. Tyler collapsed at school with stroke-like symptoms. After a ride in the ambulance and a CT scan, he was immediately admitted to the hospital with an entire team of doctors. No one could quite tell what was going on, but it became immediately evident that Tyler had an extreme amount of pressure on his brain due to extra spinal fluid.
The doctors’ focused on bringing Tyler’s brain pressure down. From there, they began several tests to work to identify what was causing the extra fluid in his brain. After an MRI scan, several little bubbles were found lining the bottom of his brain. Not having seen this before, the doctors agreed that this was likely causing his issue, but what were they?
It became evident that the non-invasive tests were going to identify the bubbles, so Tyler was scheduled for a brain biopsy. The biopsy was sent to St Jude’s for diagnosis, as it continued to be rare enough that the local physicians were not familiar with it. We began to prepare for the worst, while trying to stay hopeful.
After the longest week of our life, we finally had a diagnosis. Tyler had a rare, inoperable brain tumor. We quickly had to come up to speed on brain tumors, chemotherapy and all that entails.
Throughout the entire hospital stay, Tyler remained strong, routinely asking why he was in the hospital. These other kids that he saw were so much sicker than he was. He wanted to give his room up for one of those other kids. His humor in the hospital, inquisitive nature and his upbeat personality kept the doctors’ hopping. Some of his doctor’s even received homework!
While we were relieved to have a diagnosis, we began the toughest journey of our lives. We remain hopeful, knowing the strong fighter that Tyler is. His humor, personality and stubbornness are needed now more than ever. Here is where our journey begins…
This is beautiful…please take the time to read this letter to Sarah. Sarah is kind of a big thing. smile emoticon Love you Sarah and family!!
To our sweetest Sarah,
This is, in fact, one of the hardest letters that we’ve had to write in our lives. Nevertheless, we need to have the peace in our hearts that we can continue to be your rocks while you’ve been our hearts for these many years. You are about to triumph one of the hardest obstacles in your short life. We are scared, worried and sad that our girl has to go through this and that we can’t take your place. Please know that we would without hesitation.
When Mommy met you in the Pediatric ICU, she melted. There were so many complicated affairs in your life not to mention the seemingly insurmountable list of medical diagnoses and events in your life. Through it all though, you came out of them. A little battered, a bit bruised but nonetheless, you were the winner in your game of life. How could we say no to you? How could we not want to give you the family that you deserved? How?
We were so happy on your adoption day. You were our daughter and more importantly, we had you. We were a family. There are so many that say that you are blessed to have us in your life. Not true at all. We are blessed to have you as our daughter.
In your short eleven years of life, you’ve been hospitalized already 40 times. These hospitalizations include your two heart infections, countless bacterial infections throughout your body, your brain bleed at six months of age, heart procedures and a transfer or four in an ambulance or helicopter. We are constantly amazed at your will and want for more- more time with your best bud, Daddy, more time with your puppies to snuggle and more time to share your story with anyone that will listen.
We’ve attended the care conferences of specialists saying that they can offer no more and that they need you to seek care at another institution to give you the best. And we do, we fly to Philadelphia almost every year for the “wizards” to help our girl. They have and they will continue to give us more time and more love from you.
Soon, we will board that plane once again. This time for your third open heart surgery. The one. The one that we’ve heard about in fairy tales. The one that will give you a bigger and better heart valve. One that will help you grow and gain back the weight that you’ve lost so quickly in the past six months. By all views, this should be great. This, though, will be your biggest obstacle yet, we fear.
The heart surgeons will need to reconstruct your heart from the outside in. They will need to transplant your heart arteries and build a base for your new valve. Your largest piece of plumbing will need to be replaced with new. All while your heart stands still in your sweet chest. This will be hard. Your heart surgeon has practiced for decades and has admitted that this will be one of the most difficult in his career. He’ll be successful. The road to your recovery could be weeks to months while in Philadelphia. We’ll be there. We’ll always be there.
Now take the time to be amazed at yourself. Initially, we were told that we were bringing you home as a hospice foster baby. You celebrated your eleventh birthday this year. We struggle for years to get you the physical and occupational therapies. You started walking when you were five. Goals have been written to work towards a goal of you understanding one step directions. You now clean your spot at the dinner table. Take this amazement and wonder of your sweet self and be awesome in Philly.
We love you sweet Sarah. May you never stop encouraging others to be amazing.
Daddy and Mommy
Check out his amazing story below and those battle wounds on his chest. He is a little stud! This story is to raise awareness for congenital heart defects, where anyone is at risk and many times there is no genetic link to these defects.
At Karsten’s 20 week ultrasound, he was diagnosed with Transposition of the Greater Arteries (TGA) and Coarctation of his Aortic Arch (COA). Jon and Jess were devastated, but they knew it would all be okay because it was “fixable”. Karsten would require open heart surgery within the first couple weeks of life. Two week later, 22 weeks gestation, the perinatologist (high-risk OB), met with Karsten’s parents and did his first ultrasound. He found that the baby had accumulated Hydrops Fetalis and ordered an amniocentesis. A week later, the hydrops progressed to ten times the original measurements and baby Karsten started showing signs of congenital heart failure. At that point, there was nothing the family could do but wait and pray. The results of the amniocentesis showed there were no genetic or chromosomal mutations, further supporting that the baby was going into congenital heart failure. Karsten was too small and sick to be delivered and considered to have zero chance at life.
On a Sunday evening, the couple went into the hospital because they had not felt the baby move for two days. An ultrasound showed that Karsten was hardly registering a heart beat and the family was prepared for their first still birth. The three doctors who came and looked at the ultrasound were all certain it was just a matter of hours until his heart would stop. Jon and Jess were referred to a clinic that could stop the baby’s heart since there was zero chance of life; however, the couple knew it wasn’t their decision to make. Jon and Jess chose to go home and follow up with their doctor the next morning or for labor to start.
The following Monday, the doctors received the results of the baby’s viral panel and it showed that he had the B19 Parvo virus. This is not that same virus that canines get, and it is not associated with the heart. Jess had been exposed to the Fifths Disease Virus (common virus in young children), and it had been passed onto baby. The doctors were able to give Karsten two, separate blood and platelet transfusions through Jess’s belly into his umbilical cord. The first transfusion didn’t help baby, but a week later the second one almost cured him of his hydrops. Jess started to show signs of Mirror syndrome and accumulated three times the amount of amniotic fluid as normal pregnancies, which sent her into preterm labor.
Despite the 10 weeks of hospital bedrest, three trips to labor and delivery and being faced with two possible still births of “Special K”, Karsten was delivered at 36 weeks. He stopped breathing and his heart stopped within the first thirty minutes he was born. He had an emergency Cath Lab procedure hours after birth, and he had his first open heart surgery the following morning. Post surgery his lungs collapsed, causing a longer stay than anticipated. Karsten was also unable to feed from a bottle and came home with an NG (Nasogastric) tube and worked with occupational therapy until he was able to feed from a bottle.
Recently Karsten was diagnosed with vocal cord paralysis which is attributing to breathing issues. He has a swallow study coming up to ensure he is not aspirating food and other foreign particles into his lungs. He also has restricted blood flow to both lungs and it is very possible he is facing another open heart surgery to repair the restrictions. Despite all this little guy has been through, Karsten continues to show those around him to never give up hope and keep on fighting the good fight.