Vivian’s Journey to a New Kidney: Rare but Strong

Vivian’s Journey to a New Kidney: Rare but Strong Supporting Vivian, a 16yr old preparing for a kidney transplant living with two ultra-rare diagnosis.

Trip #19 UpdateThree doctor appointments, an ultrasound, lab work, and an iron infusion. First and foremost, I would ...
06/09/2026

Trip #19 Update

Three doctor appointments, an ultrasound, lab work, and an iron infusion.
First and foremost, I would like to thank God for answering our prayers. I also want to thank each and every one of you who has continued to keep Vivian in your thoughts and prayers. They have definitely been answered.
Over the past few weeks, Vivian has been feeling much better. Her nausea and vomiting have decreased, but still continues to struggle with fatigue and often sleeps late into the day, her body clearly needs the rest as it continues to heal.
The iron infusions, along with changes to her medications, seem to be making a difference. She has also regained some of her appetite and has been able to put a little weight back on, which is very important as we prepare for transplant.
At this time, Vivian has NOT yet been placed on the transplant list as we are still waiting on a few test results and updated insurance information. It can definitely be frustrating at times but I’ve been reminded that I must trust Gods plan and everything is in His time.
We also recently changed nephrologists, and it has been one of the best decisions for Vivian's care. Dr. Randa Razzouk has been amazing, and we are incredibly grateful for the compassion, attention, and support she has provided. She has truly made a difference in Vivian's journey.

Thank you all for continuing to pray, support, encourage, and walk alongside us. We are hopeful and thankful for every small victory along the way.❤️🙏🏻

Ps. Thank you, Jessica Danyelle Jordan for having us over at your beautiful ranch. Can’t wait to go back and have some outdoor fun!!

Lunch is ready for pick up!! #1 Warwick Drive
05/16/2026

Lunch is ready for pick up!!
#1 Warwick Drive

05/16/2026

Trip #18

After nearly two weeks, we are finally home.💙
Vivian had a port placed yesterday, and everything went well. Her veins are very small, and it had become very difficult for everyone, including the IV team, to draw labs and place IVs. We are hoping this helps keep her from having to be stuck with needles so often.
She has been so strong through all of this, but this part has been a little more painful for her. We are praying the soreness eases over the next few days. She also received her third iron infusion today, and we are hoping it helps raise her hemoglobin so she can start feeling a little stronger and have more energy again.
We will return the first week of June for several appointments and more iron infusions.
Thank you all so much for the continued prayers, love, support, messages, and check-ins.
Many blessings to each and every one of you! ❤️🙏🏻

05/15/2026

After many tests, we finally received some answers regarding Vivian’s health. The gastroenterologist diagnosed her with yet another very rare disease called Esophagitis Dissecans Superficialis, which may explain the nausea and vomiting she has suffered with for so many years.
The doctors are continuing to work on raising her hemoglobin, and today she received her third infusion. We are still waiting on cardiology and additional lab results to determine if she will also need to see a hematologist.
Vivian’s tiny veins have made this journey especially hard. Blood draws and IV placements continue to be very difficult, and she developed a clot in one of her arms, so that vein can no longer be used. The doctors have decided it is best for her to have an access port placed, so she will be going under anesthesia once again in the morning.
Please continue to pray for Vivian. We are hopeful all goes well and praying we can finally go home tomorrow. ❤️🙏🏻

(Video from Mother’s Day celebration here at hospital)

Vivian hasn’t been feeling as well as we had hoped while on dialysis and has been hospitalized since Tuesday of last wee...
05/12/2026

Vivian hasn’t been feeling as well as we had hoped while on dialysis and has been hospitalized since Tuesday of last week while doctors continue running tests and waiting on more answers.
It has been a very difficult and emotional time for our family. Her hemoglobin remains very low, and this morning they attempted an iron infusion, but she had an immediate reaction and they were unable to continue. The doctors are now working closely with multiple specialists, including gastroenterology, endocrinology, cardiology, hematology, and even reaching out to the National Foundation for Ectodermal Dysplasias for additional guidance.
Please continue praying for Vivian. Our biggest prayers right now are for the doctors to find the cause of her low hemoglobin, for her strength and energy to return, and for her body to heal so she can eventually receive a new kidney.
We truly appreciate all the love, support, and prayers❤️
On a sweeter note, Vivian absolutely loved the Capybara surprise from her Tia Mom & Uncle Alfred. She can’t stop talking about how cute he is. 😊

Since arriving Tuesday, nephrologist on call, Dr. Randa Razzouk has been wonderful and truly listening to all of our con...
05/08/2026

Since arriving Tuesday, nephrologist on call,
Dr. Randa Razzouk has been wonderful and truly listening to all of our concerns. She understands that Vivian’s situation is very complex and is looking into every possibility to help find answers. We also have been blessed with the most caring and sweetest nurse, Janete at the 3P Nurses station on the Pavillion Tower.
Over the past few days Vivian has gone through many tests, scans, new medications, and this morning she will have both GI scopes done. They have also started IV Epogen treatments, three times a day intravenously to help raise her hemoglobin levels.
These past ten months have been emotionally, physically, and mentally exhausting for our family. We continue praying for answers, for healing, and that Vivian will soon be strong enough to be placed on the transplant list.
Thank you all for your prayers, love, and support. It means more than you will ever know. ❤️🙏🏻

05/06/2026

Vivian's hemoglobin dropped from 8.5 to 7.5 over the last few days, which helps explain why she's been feeling so weak, short of breath, and exhausted.
The doctors are working to figure out what's causing the drop and how to treat it.
Please continue to keep her in your prayers as we wait for answers and next steps.
For a healthy teenage female, normal hemoglobin is usually around: 12.0-15.5 g/dL
In someone with stage 5 kidney disease or on dialysis, doctors often accept slightly lower numbers because anemia is very common.10-11.5 g/dL

8.5 = already significantly anemic

• 7.5 = severe anemia range for many patients
That's because hemoglobin carries oxygen throughout the body, so when it drops, the heart and lungs have to work much harder

We are so grateful for the amazing care Vivian receives at Cook Children’s Medical Center here in Ft. Worth. She is always treated with so much compassion and kindness. We truly feel she is receiving nothing but the very best care.
Thank you all so much for your love and support .💙🤍🩵

Yesterday, we were asked to return to Ft. Worth this morning so Vivian can be seen in the ER and admitted to the hospita...
05/05/2026

Yesterday, we were asked to return to Ft. Worth this morning so Vivian can be seen in the ER and admitted to the hospital for the next few days. The symptoms she’s been dealing with are not typical for someone on dialysis right now, and although her labs look stable, doctors still don’t have answers as to what’s causing everything she’s going through.

We’re praying that she’s able to be seen, checked thoroughly, and tested for anything that might help lead to answers.
Please keep Vivian in your prayers, that the doctors are guided, that they find the cause, and most of all, that she can start to feel some relief and comfort soon.
Thank you for your continued support and for keeping us in your prayers. It truly means more than words can express.
With much love,
The Hernandez Family 💙

Thank you so much to Laura, her family, and dear friends Maribel, Rose, Yvonne, & Valerie for coming together to support...
05/04/2026

Thank you so much to Laura, her family, and dear friends Maribel, Rose, Yvonne, & Valerie for coming together to support us during this time. We are truly grateful and appreciate it more than words can say.

If you’d like to place an order, please feel free to reach out to me as well. 💙

05/03/2026

Update:

Many of you have been asking about Vivian and how she’s been doing since her last visit, so I wanted to share an update after we spent all day Thursday in the ER.
Vivian continues to struggle with extreme fatigue, nausea, and vomiting, which used to be only in the mornings but now lasts throughout the day. Over the past few months, she has also developed episodes of rapid heart rate, and just this past week, shortness of breath.
She’s been wearing a heart monitor, and we’re waiting on answers. We’ve also been referred to a hematologist after noticing bruising, hoping they can help us understand what’s going on after seeing so many specialists without clear answers.
Because of her condition, Vivian will no longer be able to attend school in person this year. She’s been doing her best to keep up online.
Watching her go through this has been incredibly hard, and I haven’t been able to stay consistent with work while caring for her and managing everything she needs.
We are holding onto our faith and praying she will heal and return strong for the 2026–2027 school year.❤️

If you’re able, please continue to keep Vivian in your prayers and share her journey with others. Your love, support, and prayers truly mean everything to us.

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Fort Worth, TX
76104

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