		Memorials

Memorial Page

This memorial photo gallery is here to share the experiences and love of NH families through photos and words. Anyone wishing more information and wishing to have their baby's story and/or photos added to this page, should contact Sandra Thomas at: mail@americanhs.org or call toll free: 1-888-655-IRON (4677).

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"Our beautiful angel..."

Anthony Carmine

"Here is a picture of our beautiful angel Anthony Carmine who was born on Feb 12, 2005 at 8:32pm. He weighed 2lbs 14oz and was 15 inches long and left my arms on March 8th, 2005. He was such a little fighter and never let his sickness affect his personality or spirit. He was always alert and moving around. He was so strong and never gave up. He was, and still is, my little Baby Boy who only lived for 24 days but in those 24 days he made his mark in this world and made usso proud. He was born to TinaMarie & Rich Ruzicka Of Island Park, NY."

Thank You So Very Much,

TinaMarie and Richie Ruzicka

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We regret to report the passing of NH baby, Paolo Deguzman, who died due to Neonatal Hemochromatosis (NH) on July 9, 2006 in San Diego, California. Paolo was about two months old and was a true fighter until the end. Our condolences go out to Paolo's parents and family.

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"Our little hero..."

Teyte Caidyn Riley Carraill

This is our wonderful little miracle man--Teyte Caidyn Riley Carraill . He was born at 12:07am , 3 rd July 2006 weighing 4lbs 9oz & 48cm. We could never be more proud of anyone; he truly is our little hero, with so much personality, strength and calmness to take everything in his stride, he never stopped amazing us. Even the looks in his eyes were not of a baby, they were so worldly, like he had been here before. When I cried, he would look at me like he was saying “don't worry Mum, I'll be ok”!

Teyte Caidyn Riley Carraill

He fought long and hard, amazing the doctors every day and, quietly passed away 6 and a half weeks later on the 17 th August 2006 , in my arms. We are so blessed to have him in our lives. Teyte may not be here physically, but he is what keeps my heart beating every day, as it is filled with his spirit and my love for him.

Proud parents,

Stacey Williams & Andrew Carraill , South Yunderup , Western Australia

Update/July 4, 2007:

Hi there Sandra,

It's been quite a while since I've sent you an email. I hope you and your family are well and that 2007 is turning out a very good year for you all. Yesterday was our dear little Teyte's 1st birthday, which I found to be a happy and very sad experience for me, I think it puts you in your own little world for the day. I'm very lucky to have the support of such wonderful friends and family, I think I'm very blessed that way.

I also have some good news for you, I'm 16 weeks pregnant and will be starting Dr Whitington's treatment on the 18th of July. Thanks to your support and Dr Whitington and his staff, I am feeling quite relaxed about everything.

Super kind regards,

Stacey Williams

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"Our beloved baby girl...."

Kate Sevcik

This is our beloved baby girl, Kate Sevcik. She came into this world on October 13, 2006 weighing 7 lbs 5 oz. All looked good and she came home with us. At 5 days of life, we took her to the ER at the children's hospital for low temperature and bruising spots on her body. Two weeks later she was transferred up to D.C. for a liver transplant. She was such a little fighter. One morning she decided to extubate herself and remained off the respirator until her transplant. She died in my arms on November 25, 2006. We are so grateful for the wonderful doctors and nurses that were so dedicated to her, and for those seeking an end to the devastating effects of NH and the loss of our precious babies. We can't wait for the day when we can hold her again in heaven.

Joe and Melanie Sevcik

Note: Please go to the photo gallery to see the twin babies that Joe and Melanie had after losing little Kate.

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Kamryn Jenae Galloway

5/12/2001 – 7/11/2001

Kamryn on her birthday 5/12/01

Several days after Kamryn was born she had been diagnosed with NH. 9 days after her birth she was on a plane to UCSF. They could help her there and get her a liver transplant. For 6 weeks we traveled back and forth from San Diego to San Francisco . Kamryn never got well enough to get a liver transplant. She lost her battle with NH on July 11, 2001. This was the hardest thing we had ever been through.

Kindest Regards,

Kathy and Kerry Galloway

Note: Although Kathy and Kerry lost little Kamryn they decided to try to have another child. Please go to the "Photo Gallery" section to learn more about their "Double Miracle". Sandra Thomas, President, American Hemochromatosis Society

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Ryan Stephen Jack Mitchell

12-17-2004 to 01-12-2005

I have a daughter Katelyn who is now 6 years old born (25.3.01). The first 4 weeks were constant crying. At five weeks Katelyn's feeds were reduced dramatically to the point she became dehydrated. Upon a visit from the Community Nurse she advised we take Katelyn to hospital. After a Care Flight helicopter ride to Westmead Childrens hospital Katelyn was found to have Supra-Ventricular Tachycardia caused from Wolf Parkingson White Syndrome. Katelyn was on medication for 12 months and has not had a reoccurance. Katelyn's next scan will be at 9 years of age. It is also very good to see that it has not effected her in any way.

Three years later we tryed for another child. Ryan Stephen Jack Mitchell was born (17/12/04). He was cleared of SVT & WPW and sent home with a little Jaundice. We had a wonderful Christmas with Ryan and he did not show any signs of what was in store. When he was 20 days old the Jaundice was not getting any better and he was having trouble waking for his feeds. We started to worry as we had gone through the reduced feeds with Katelyn and we started to think about whether Ryan was hydrated. The Community Nurse arranged for the Pediatrician at the hospital to have a look at him. At the hospital the Doctor took some blood and said he may have to go under lights. He sent me home and said he will ring me in an hour with results. The doctor called and ask me to get to Westmead Children's Hospital urgently. We got to the Westmead Hospital and doctor's did more blood test to try and find what was wrong. At 21 days old Ryan went into a mini coma and did not wake for 4 days. After daily blood tests, it was found that he had Neonatal Hemochromatosis (NH) and there was nothing they could do but support him. Ryan passed away 26 days old at 8.55pm on the 12/1/2005. The loss of Ryan was devastating to Stephen, Katelyn & I.

At the time of Ryan's passing the Professor looking after Ryan suggested some test to be completed to confirm their diagnosis. A biopsy was taken of Ryan's liver. Six month's we received the results back from the liver biopsy. It was not genetic and it was confirmed NH. The Professor told us about Dr Whitington's study and advised us who to see next to be part of the study. Twelve months later we were approve to have Immune Globulin. This was very exciting as it now gave us the opportunity to have another child.

In July 06 we had great news that I was pregnant. We start the Immune Globulin at 18 week's. I spent 8 hours ever Wednesday until the 36th week and I was induced at 36.6 weeks. Jonathan was born (23.4.07) a Beautiful 3.5kg (7.7pounds)and 54cm long. Jonathan's ferritin & AST were slightly elevated but with Vitamin E injections he was fine. We were sent home with no medication after six day's. Jonathan is now 23 weeks and is going great. A very happy boy and a very happy family.

Lynette Mitchell

(Note: See the photo gallery section on our web site for photos of the baby who was born after Ryan. Ryan's mother was part of Dr. Whitington's program for moms who have had an NH baby in the past who want to have another child.) Sandra Thomas, President, American Hemochromatosis Society (AHS)

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Gisele Maria Lester

August 2, 2007 - October 13, 2007

“Now faith is the substance of things hoped for, the evidence of things not seen.” Hebrews 11:1

Gisele was born at Women and Children's Hospital of Buffalo New York on August 2 nd 2007 my second child. She was born 2 lbs and 11oz at 35 weeks gestation and I was shocked. Throughout my pregnancy the only thing outstanding that occurred is that I was risking my health to have her because in 2006 I was diagnosed with Chronic Myelogenous Leukemia (CML) and at 18 weeks gestation the alpha fetoprotein (AFP) blood test showed 1 out of 25 chance spinal-bifida. Further testing showed that she was growing well and had no visible sign of Spinal-bifida and my blood work showed no sign of growth. So when she was born spontaneously and so small I was in shock. Further testing revealed that she was severely thrombocytopenic (very low platelets), couldn't keep her blood sugar elevated, Prothrombin time (PT) of 35 normal being 10-15 and elevated alkaline phosphatase (ALP). She was diagnosed with DIC and I was told she would need blood transfusions and this would most likely clear up on its own. No one could tell me why this happened. She was given supportive care of every kind seen by endocrinologist, gastroenterologist, cardiologist, and pulmonologist. This went on for weeks with no answers. I researched, spent hours upon hours in the hospital interrogating doctors and nurses, feeling guilty and angry for all her suffering, wishing to hold her and feed her but could not. About a month into her hospital stay her lungs became occluded with clots in my opinion due to the continuous plasma and daily platelets infusion to prevent her from bleeding. She managed to survive this thanks to the great care she received. Finally, Children's Hospital of Pittsburgh was contacted. They quickly came up with the diagnosis of Neonatal Hemochromatosis. She was stabilized and a chopper on October 5 th took her to Pittsburgh. At Children's Hospital of Pittsburgh I received a lot of hope that with a liver transplant she could be saved. My little Angel couldn't hold on any longer she became septic and began to have severe ascites that caused her kidneys to fail. When her lungs showed signs of failure due to pneumonia I decided to let her go. She died in my arms on October 13, 2007 at 8:25pm. I know my Gisele suffered more than I can imagine and I know she knew me. She would open her eyes when she would hear my voice despite being heavily sedated. I sit here today aching to hold her, see her grow and I know I won't have that privilege. My hope is that more doctors could know about this HORRIBLE disease. My Gisele spent 73 hard days on this earth and I held her seven times.

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"Strong little girl..."

Alice Mary Rowlands

25 September 2007 to 10 October 2007

Dear Sandra,

Alice Mary Rowlands was born on 25 September 2007 at Norfolk and Norwich University Hospital, Norwich, England. She died on 10 October 2007, 15 days old, at King's College Hospital in London, England. I have attached a photograph of Alice for your website and my letter to her, which I read at her funeral:

Dear Alice,

You were such a strong little girl and you knew what you wanted, right from the start. You fought your way into the world six weeks early to meet us all because you couldn't wait any longer.

Whatever you wanted, whatever you needed, we did our best to give you. When you wanted to go to London to see the liver specialists we all went with you, giving you all our love, willing you to get better.

Little princess, you told the nurses who came to take you to London that you didn't like the blue and orange quilt in your travel incubator. They changed it for a pink flowery one, especially for you. I must admit, it suited you far better.

At King's College Hospital you had a bed by the window, with the best view of London in the whole hospital. Your big brother was so thrilled to see Big Ben when he came to visit you. But you knew Sam would really like to get a better look at Westminster , so you arranged a special trip to Saint Thomas 's Hospital one evening. After the doctors looked at your heart and said it was working fine, we took Sam outside to have a closer look at Big Ben. We all enjoyed the trip, but afterwards we were glad to be going back to King's with you.

Every day of your life you endured medical procedures. You had intravenous medicines, blood tests, x-rays… But you were so sweet natured and bore it all placidly. Seldom did you complain.

I am full of admiration for your inner strength and tolerance. I can't help but wonder, what would you have been like when you grew up?

Dear Alice, we cannot guess what the future might have held, only know what was and what is now. You were our beautiful daughter and Sam's treasured little sister. You generously gave us two weeks and a day of your precious life, and in that brief interval we shared a lifetime's joy and sorrow. William Blake expressed it better than ever I could, so I share his words with you now.

To see a World in a Grain of Sand

And a Heaven in a Wild Flower,

Hold Infinity in the palm of your hand

And Eternity in an hour.

Thank you, Alice . You remain forever in all our hearts.

Miranda Rowlands

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Candelaria Gorosito

February 1st, 2001 to February 2nd, 2001

Dear Sandra:

When I wrote to you in 2001, you helped me to contact Dr. Knisely and then Dr. Whitington. I have four children now, Lia Montserrat, 10 years old; Jeremías Agustin, 9 years old; Ulises Nicolás, 6 years old; then Candelaria was born on February 1st , 2001. She lived only 30 hours—it was very bad, and she died on February 2 nd . We were all so sad, because of this loss in our family. When I watched my daughter or my husband cry, the pain increased a lot. My child, Lía, said: I would like to die so that I could stay with my little brother...” As a mother, I didn't know how to answer her. I felt that God was not looking at our problems.... but I prayed more, until the little light in the dark night appeared: I found your web site ( www.neonatalhemochromatosis.org ) and then your help, and the Dr. Knisely and Dr. Whitington, too. My obstetrician stayed with me and helped me with the new treatment by Dr. Whitington. In October 2002, Trinidad was born! Today, we all remember our little Candelaria, but Trinidad erased the bitter taste. Today, we are all grateful to God for this miracle and you and the doctors, of course. Some people might not understand why I would seek another baby since I already have three other healthy children, but I felt that I wanted to have another child after losing my little Candelaria. It was a way to honor her life, however short it might have been, and to give another soul a chance at life. This is my story.

Maria Beatriz Montico

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"Many people loved her..."

Gabriella "Gaby" Diaz

February 24, 1993 --April 8, 1993

Dear Sandra,

Thanks for the opportunity to remember my girls in this way. Gaby was born February 24, 1993 and died April 8, 1993. She was 31 weeks at birth. I lost all my amniotic fluid in a day and had an emergency c-section. She weighed five pounds three ounces and her lungs and heart were great. Of course we had no idea of the painful ordeal to come. In her first day of life, she vomited her entire blood volume. They were pumping it into her as fast as she was losing it. She went to surgery to have the ulcers repaired.

It took about 4 weeks for the doctors to realize what was causing Gaby to be so sick. In that time I came to see a beautiful personality. It was especially sweet when she would react with smiles to my voice and my touch, and to music. Many people loved her. The doctors at Rockford Memorial Hospital took wonderful care of her. She was the princess of the NICU because her Grandmother was a nurse there. She was a bronze color and had a belly full of ascites that was tapped every few days. It was very scary to let her go to Chicago to have a biopsy and be evaluated for a liver transplant. Once there, she was mismanaged and became septic within 5 days. She never did get the biopsy. Gaby's death was a horror to watch and experience. I was in the wrong place at the wrong time. I am pleased to

learn that Dr. Whitington has come up with a treatment to help families.

Danielle "Dani" Diaz

January 24, 1994--February 12, 1994

Several months after Gaby died, I was pregnant again. This was not planned. I contacted Dr. Knisely and studied his research on an experimental treatment to be given to the babies after birth. Once again I lost all amniotic fluid and had an emergency c-section at 31 weeks to deliver four pound seven ounce Danielle. She was born on January 24, 1994 and died February 12, 1994. The doctors at RMH were ready to try the experimental protocol. After one week, they could see that it was not working, so my parents contacted several liver transplant hospitals and started checking them out. Obviously, we were not going back to Chicago. In the end we decided on Pittsburgh, where coincidentally Dr. Knisely was practicing. Danielle was flown by Lear jet to Pittsburgh. When I arrived there, she was being cared for and loved by a wonderful nurse named Jennifer. Dani was uncomfortable and agitated most of the time. She needed to go on the respirator to give her lungs a rest. It was hard to see her suffer. She was precious, and had deep dark eyes. While I was with Dani in Pittsburgh, my three year old (Tara) contracted the chicken pox. I had never been away from her, so I went back to Illinois to see her and then planned to turn right around for Pennsylvania. There was a horrible ice storm, and I couldn't leave right away. Jennifer called me almost every hour to give updates on Danielle. When I was finally on the road, Danielle had a terrible brain bleed. It was determined that surgery could not be performed on her with so much brain damage. After the brain bleed, Dani's face softened and she lost all the puffiness, and was the most beautiful baby I have ever seen. That is saying a lot because all of my babies were gorgeous. She no longer felt any pain. Nurse Jennifer stayed with me, and dressed Danielle in a pretty dress and bonnet. She chose a blanket for her that matched her scrub jacket. That meant so much to me. I had to say when to turn off the life support, and held her while she died. It was so sad watching her gasp for air. Her death was more peaceful than Gaby's. Dr. Knisely performed her autopsy. Her liver was shriveled and hard.

Of course, I have never really recovered from the trauma of their deaths. A part of me is lost and broken even after 12 years. There's a void that cannot be filled. The raw pain subsided after two or three years, and a numbness replaced it. I guess that is coping. I have been able to live life and work and love. We became foster parents and adopted a wonderful little boy named Michael. Tara is now 14, and Michael is 9. My husband,Edgar, and I have had terrible struggles as a result of our grief, but we are still together. I had my tubes tied while having Danielle. I was able to accept the deaths of my children because I know I will see them again, and I know that they do not have to suffer in this world. Part of me is thankful that they have been able to escape the pain of this world and move on to a life with God, the creator of all things...the majestic King. How spectacular that must be. I know I could never have provided for them the life they have now. The hardest part of my life has been accepting that I could no longer have a healthy child. I see now that other families may not have to carry that burden. That is good.

Sandra, thank you for taking the time to make a difference. Even after so many years, I am happy to be able to honor and acknowledge Gaby and Dani's lives in this small way.

Sincerely,

Karen Diaz

(Roscoe, Illinois)

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"Gone from our sight, but never our memory

Gone from our touch, but never our heart..."

Denzel Oliver Hill

September 29 – October 15, 2007

We live in Sydney, in a mixed marriage of an Australian father and an Indonesian mother. Kayla our daughter was 2 years 5 months when our son, Denzel Oliver Hill, was born. He had a special unexpected arrival for the birth. Kayla was nine days overdue and took 14 hours labour, so when the due date arrived and he was still not born, we were expecting the same scenario. On September 29, 2007, at five days overdue, I was putting my sandals on to go to the hospital when I started having really strong contractions about one hour after the first contraction. After a total of three strong contractions, Denzel decided that he wanted to be born at home and caught by his Dad on the floor of our lounge room. He was blue but breathing OK. The ambulance arrived not too long after that and they took us to closest hospital, not the hospital we booked in. The placenta was delivered in Auburn District Hospital and the midwife commented that it was a huge placenta (we can relate to this after more reading on NH). He was a big baby boy, 4300 grams (9 lb 7.68 oz) and 56 cm long (22 inches) with lots of hair.

The paediatrician was concerned with Denzel's blood count as the platelets were very low. This indicated there might be internal bleeding. As he was born at home, there were concerns that he had bleeding in his head, so they organized for a head ultrasound in Westmead Children's Hospital. There was a clear result and happily we were discharged from the hospital on day 5, with a planned follow up blood count and visit to the paediatrician within a week time.

We had a happy life as an expanded family in that first week. Denzel latched on really well, a good eater, sleeping well and an easy going personality. On the follow-up with the paediatrician at 11 days, he start looking a little jaundiced and his weight and blood count was still not picking up. But no major issues were discussed on the appointment.

The next day, at 12 days old, he's vomited a lot after every feed. We took him to the Emergency Department of Westmead Children's Hospital and he was admitted in Neonatal ICU. The next day there were so many different specialists that had seen Denzel. Countless blood tests, ultrasound images, plasma transfusion. By the end of the day, one of the specialists talked to us and mentioned that Denzel's liver doesn't work properly. The liver failure could come from infection and possibly be treatable but there was the possibility that he had a rare and untreatable disorder called Neonatal Haemochromatosis.

It was found that he had Urine Tract Infection and they treated every possible thing that they could treat. But sadly within 48 hours, there was no progress from any of the treatment.

On day 15 he kept going downhill. He was not responding, looking very jaundiced, the alarms beeping a lot, his little body moving in very jerky movements. He was making lots of noises and had trouble with breathing. Our little Denzel finished his battle in our arms at 5 am on October 15, 2007, only 16 days old. About five weeks later, the post mortem results confirmed that he had Neonatal Haemochromatosis.

Gone from our sight, but never our memory

Gone from our touch, but never our heart

Irma and Robin Hill

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"Our precious girl..."

Charlotte Mai

April 12, 2002--April 27, 2002

My name is Dawn and I am from Leeds in the UK. In 1999, I gave birth to my 1st child, Lewis, who was a healthy boy. On Lewis' 1st birthday we decided to try again and 14 months later I was pregnant ! To our delight we found out we were having a girl.

On April 12, 2002, I went into early labour at 32 weeks and gave birth to Charlotte Mai. Everything appeared to be fine until her blood started to show it wasn't clotting properly and within 48 hours Charlotte had a very bad internal bleed into her lungs. She was very ill and we didn't know why until about day 7 when it came to light through a scan that Charlotte had liver failure. We felt numb and couldn't really understand what was happening. Charlotte was moved to a nearby hospital, St. James, where they had paediatric special paediatric liver team. On April 27, Charlotte lost her fight and died in our arms. We never got a real answer for losing our precious girl other than liver failure was the cause of her death.

Within a couple of months I was pregnant again. We were obviously nervous but the hopsital kept a close eye on me and everything just seemed to feel right this time. On March 4, 2003, I gave birth to sophie! She was perfect and healthy, too. She had lots of tests but everything was fine. Sophies birth healed so much of our pain and she was very special.

"She was so beautiful..."

"Ruby Isabelle "

May 31, 2008 -- June 2, 2008

Nov 2007, I was expecting again after a very early miscarraige. We found out I was having a girl again. To be honest, during my pregnancy i worried alot and things felt different. I did express my concerns to the hospital but we were reassured not to worry.

On May 31, 2008, I gave birth to Ruby Isabelle 4 weeks early. She was so beautiful. After having routine blood tests shortly after birth her blood sugars were very low and so were her platelets. We suspected Ruby may have an infection and never expected what was to follow. Day 2 Ruby's clotting factors were checked and our world fell apart when they came back abnormal. Ruby was given every possible treatment to prevent any bleeds and it was obvious history was repeating itself. The liver doctors were wonderful but sadly by the end of day 3 Ruby got very ill and we had to make the decision whether to ventilate or not. We couldn't let Ruby suffer and get to the stage like Charlotte did. We took Ruby in our arms until she grew her wings. It was so hard to think we were having to go through all this again.

This time I needed answers and a limited postmortem revealed that Ruby had died from Neonatal Hemochromatosis. We now know that this would likely have been the cause for Charlotte's death, too.

Life is so cruel and having done research my heart is with all other families affected by this cruel condition.

Dawn Coulson

This site was last updated 4/27/09