“Hannah, 10 months old, with neuronopathic Gaucher's Disease”
Our 10-month-old daughter, Hannah, was diagnosed with Neuronopathic Gaucher's Disease, an incredibly rare and fatal genetic metabolic disease with painful physical symptoms and severe, progressive neurological decline. We are in a fight to save her life.
Because this disease is so rare (affects only a few hundred children worldwide), this disease is horribly underfunded and underresearched.
Hannah's neurological symptoms have already started to appear, so we know that our time with her will be very limited if we can't find something, anything to slow down the progression of the disease.
Without awareness, there is no funding. Without funding, there is no research. Without research, there is no treatment. Without treatment, I'm going to lose my daughter.
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Young Boy With Rare Disease by Jaime
“Battling Eosinophilic Esophagitis”
Hello my name is Riley. I am a 4 year old and I have Eosinophilic Esophagitis. I was diagnosed January of 2008. I want to share my story with everyone so people can understand more about Eosinophilic Disorders.
It all began in Cape Girardeau Missouri August 11th 2004. I was born,Barely weighing 6 pounds I had a few problems in the beginning. Overall my mother thought she had a healthy baby, until I ended up in and out of the hospital. I was always sick without much explanation. At one point the doctors thought I needed surgery on the muscle opening to my stomach, since it wasn't allowing the food to go through properly. After visiting Children's Hospital in St.Louis for a few days, they decided the condition was border line. Thank god no Operation was needed. But my mother worried as I continued to have health problems. Just this year in January 2008 I was diagnosed with a rare illness called Eosinophilic Esophagitis. This went misdiagnosed for 3yrs of my life. Currently there is no cure for this illness and not many doctors know about it. Trying to get medical treatment has been very difficult. The worst part is when the doctors can't even answer our questions. Currently the illness is in my Esophagus, but it can be else where in my body.
My mother has now learned that the best treatment for me is in Cincinnati. They have a treatment center just for Eosinophilic Disorders. She is currently working on the paper work to get an appointment. She can not wait to get me the best treatment possible.
As of today we are without a home. We began staying in a shelter in August 2008 right after my 4th Birthday. My mother was hospitalized twice in September 2008. As of right now we are currently seperated until my mother can get back on her feet. She has been strong for me these past 4 years and I can't wait to be with her again! I have never been away from my mother this long.
If in any way you can help that would be a blessing. My mother is currently unable to work and she desperately needs your help. She needs money to send where I am temporally staying so I can go to pre-school and have food to eat. We are close to having our car taken away since she has been unable to pay the monthly payment. We need our car to get back and forth from the Hospitals that are near and far. As soon as she gets a place for us to live and enough money for the plane tickets I can come back home. I miss my mommy so much and can't wait to see her! She is the best mommy in the world!
Thanks for taking the time to read our story.
Love, Riley
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James has Leukemia 4 years after Dad fights Lymphoma. by Jesse Curry
“James A. Dooley (Healthy)”
The Dooley Family live across the street from me (in Kansas), and their little boy who will be 4 on October 6th was diagnosed with Leukemia on June 23rd. Within days of the diagnosis he began a 3 year process of Chemo Therapy treatments. Along with this comes regular Blood Testing and Bone Marrow testing. As I type this e-mail he is in the hospital and has been for two weeks fighting a fever. It will be a hard task to keep him healthy as he has no immune system because of the Disease and Chemo. As if this isn't enough to deal with, the father beat Lymphoma Cancer 4 years ago. They truly know how hard the road ahead will be. They are a very nice family who work very hard to make ends meet. That is why another neighbor (Teresa) and myself are trying to help them out. A local attorney was kind enough to donate his time and services in creating a Trust for James and a local bank has opened the Trust account for James. ("James A. Dooley Relief Trust Fund") We are hosting a Trail Ride on October 4th to raise money for the family. We are also reaching out to every one we can to help support the family financially. Their jobs are being very supportive, but if they are not at work they are not making any money. Can you imagine having to choose between a paycheck and being there for your sick child? With gas prices so high, they have to bear that burden as well. They have very old and worn out cars and they are making sometimes daily trips to the hospital. We are just trying to take some financial stress off of them as this will be a long 3+ year journey.
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Please Help by Carl & Norma Freymuth
Hello, Our son Cody suffers from a rare metabolic disorder since the age of three months old. Our entire family has been going trough a lot of heart ache these past four years. He will be four this August 14 and he is still developmentally a newborn. He has up to 100 or more seizures a day, suffers from involuntary movement, acid reflux, and asthma. The last time he looked into my eyes and smiled was two days after his seizures began. Since then he doesn't track, focus, smile, walk, talk or do anything a four year old should be doing. Our hearts are breaking and we are desperately seeking a miracle of healing. We have been financially strained with all of Cody's out of pocket expenses. We are asking if there is anyway we could get your help in able to afford a wheel chair accessible van? We are a family of eight, my husband and I have six kids with Cody being the youngest. Right now we drive our family in a mini van and that is far from being safe for us all. Please help!!
Please view Cody's website for more information on our family at the link below. Thank you and we hope to hear from you real soon.
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Justice for baby LilyRain by Sara Friedrich
“THIS IS WHAT THE SURGEON DID TO OUR BABY!!”
We need to come up with the money for our lawsuit ASAP because we need to find justice for the MURDER in the NICU of our 11 week old baby girl. Please help!
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Luci has Leukemia by Emily Edenburn
“Luci at Relay For Life on her 7th Birthday!”
Our daughter, Luci, was diagnosed with Acute Lymphoblastic Leukemia on November 26, 2007. She had been sick with a cough and fever for three weeks prior. I took her to the doctor three times and even to the dentist, with no answers, except it will run its course. Over Thanksgiving break she became extremely pale and very tired. The following Monday I took her to the doctor for blood work. By 7pm that night we were on our way to Devos Children's Hospital, in Grand Rapids, thinking it would be a quick fix. Boy were we wrong! They told us that night that she most likely had leukemia. Her blood levels were extremely low with her hemoglobin at 2, instead of 12, and her platelets at 10,000 instead of 100,000. Her liver and spleen were enlarged into her stomach region and she was in the beginning stages of CHF. She received many blood and platelet transfusions over the next few days. She was officially diagnosed on Tuesday and on Thursday received her first (of many) bone marrow biopsy, lumbar puncture and chemo treatment. Her bone marrow was 90% leukemia after her first biopsy. We stayed at Devos for two weeks, went home for two days and went back with a fever and UTI for another week.
Treatments have been going well. Her counts have dropped and climbed up. We have been in the hospital twice this month alone. It has become very frustrating and disappointing. It seems things go well and the family gets on track with things and suddenly life is on hold and either me or my husband are living at the hospital with her and the other is at home with our 2 year old son and then the bills start coming, but not the paychecks. It's hard and at times like that I try to think of how bad other parents have it at the hospital and the kids that stay for months on end. And I am thankful that we only stay for a week or two at a time. And then I am thankful that we have insurance. I don't know how some families do it.
I don't know what kind of help to ask for. I hate asking for any kind of help. We have at least two more years of treatments. It seems as if it will never end. Thank-you for taking the time to read this. Please pray for our little Luci.
Husband and wife wanting a family by a close friend
“the loving couple”
this couple have been married for 3 years they have been trying for 3 years to get pregnant the wife just got rid of complex hyperpjaysia with atypia (pre cancer in the uterus) and she also has pcos thier only hope to have a baby would be through IVF but IVF cost lots of money and they are not rich i know for a fact they would be loving parents and they would raise thier kid in the right way my friend gets real depressed because they are having such a hard time to get a family of thier own. please think about helping them if you have never had to suffer with infertility you would never know the hurt the pain and yearning for a child that this couple deals with everyday
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Funding for Faith by Janet Brcka
“Faith Nicole Cutrel”
Faith Nicole is a 10 month old baby girl born with a rare condition called VACTERL each letter stands for a birth defect. Born August 15, 2007 with the following,
V stands for vertebrae, which Faith has a tethered spinal cord that will need to be released in the next few months.
A stands for imperforate anus or anal artisia, or an anus that does not open to the outside of the body. Faith also have Cloacal where her rectum, vagina & urethra come together into one hole. She will need major reconstructive surgery when she is 14 months old.
C is added to the acronym to denote cardiac anomalies. She has DORV (Double Outlet Right Ventricle with Pulmonary stenosis and VDS (hole in my heart) She will have major open heart surgery at 12 months. Scheduled for August 19, 2008
TE stands for tracheoesophageal fistula, which is a persistent connection between the trachea (the windpipe) and the esophagus (the feeding tube). She had this repaired 9/19/07 on 12/12/2007 She had to have a Tracheotomy because there is granulated tissue flopping around in her airway. When she cry, she cuts off her air supplies. So the trach will open up the airway and allow a home vent to put the pressure she needs to keep it from closing. As of June 24, 2008 her esophagus was 80% restricted and will have to have a surgery to dilate it once a week, which will require mother and Faith to drive 300 miles 1 day a week to go to Indianapolis, In.
R stands for renal or kidney anomalies. Right hydronerophis and left polycistic horseshoe. Her right kidney functions normal and Her left one does not function at all.
L is often added to stand for limb anomalies (radial agenesis). Her thumbs did not form on the left hand and it was amputated, on the right hand the thumb was hypoplastic and does not have a bone, it needs to be amputated during the next surgery.
Faith's mother is a 20 year old single mother, with no assistance from Faith's father. Because of all of Faith's medical issues it is hard for Michelle to hold down a good paying job. She currently works part time for her church's day care. The income is minimal and enough to help her pay her bills.
Michelle does not have a very good working car, with many attempts to find out why her car runs so bad, it has cost her hundreds of dollars. She needs a good running vehical to make sure that she can travel back and forth to Indianapolis, IN where Faith is currently receiving treatment for all her birth defects. With Faith needing to go every week, it will be a strain on her financially, she currently has to rent a car so she knows that it will make it there and back without breaking down. It's very stressful trying to figure out how she is going to pay for it every time. Among other things that Faith needs such as a theraputic chair that costs $500.00 that will help Faith to learn how to sit up and balance herself.
Faith will be recieving her Open Heart surgery in August, at which time, Michelle will not be able to work and will aquire many bills to build up. I am not sure how your program works, but if there is anyting you can do to help this small but very needy family, please please do so.
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Kaylea's Story
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Please Help with some Food by Teresa Hurn
“My Kids”
I am disabled and hae 3 kids at home. This month,my money just did not make it and we are in need of some groceries. I was referred here by a member of another site and well, here I am :)
Teresa Hurn +1 989 795 2219
Help requested for Lily Mathis by Kathryn Mathis
A friend of mine has a set of triplets. One of the 3 is really ill. She would benefit SO greatly from Hyperbaric Chamber Treatments.. You can read her whole story here:
She is doing her best to get the money for all the medical supplies and everything Miss Lily Needs... I told her I would try and find some funds so she can get the treatments. We believe in our hearts that they would help Lily lead a normal life.. or at least more normal then what she is facing. The cost of the treatments are very expensive...
When I asked Kathryn (Lily's Mom) about the cost of the treatments this was her reply, "I found a used one for $15,000 plus $600 for the oxygen concentrator. Renting one is about $1600 a month. Treatments are generally $300-$500 a treatment. She needs a minimum of 200, about, to see any change. "
You may contact me for any more information at: mistys_here@hotmail.com or you may contact Kathryn directly at: jmathisfamily@gmail.com
Any ideas on how to get funds raised for her please feel free to let me know! I am going to sell whatever I can with all proceeds going to Lily... as well as Any other ideas I can raise...
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Saving Sammy, Baby in NICU needs financial Help and Prayers!
"I was born at 25 weeks(Approx 3mths early) & weighed 1 lb 4oz,I was doing great for about a month and all of a sudden I came done with an infection called 'NEC' and it killed my small intestine within hours, I need to have a Transplant. I need your help, prayers and donations to get to Nebraska."
Hi I'm Kelly, Sammy's Mom and this is Our story...
I have had a history of difficult pregnancies and was considered a "high risk." my age as well as chronic high blood pressure, and lowered kidney function due to an abruption 17 years earlier were the primary concerns. Problems started during the 22nd week of the Pregnancy. I noticed bleeding and was taken to Tacoma General. At the time we were living on Fox Island. The doctor told me that I was having an abruption and in most cases with this much bleeding I would lose the baby. Over the course of a few days the bleeding slowed and finally stopped. I was discharged and went home. About 4 days later I noticed spots of new blood. My husband Tom took me to University Washington Hospital were they specialized in high risk conditions. I was admitted and stayed 7 days. My blood pressure was under control and my kidney function looked good. The doctors were pleased with my progress. Of concern to the doctors were preeclampsia or toxemia and kidney failure. Preeclampsia is a condition prior to seizure. About 3 days after coming home I called Tom at work and stated that I wasn't feeling normal and was having a really bad headache. I contacted the hospital they told me to try to drive to the closest paramedic station to have my blood pressure checked. From our house that was a 30 minute drive. I arrived disoriented and confused. The paramedics checked my blood pressure it was extremely high. They immediately transported me to UW. The doctors told us that I would not be going home again without having the baby. A few days later, the doctors told us that they were very concerned about my liver function.
My kidneys were already overly taxed and I was still having headaches. The headaches were due to swelling of my brain. They recommended delivering the baby at this time. It offered the best chances for both baby and me. A controlled delivery properly planned rather than an emergency. Sammy was born on 1/31 at 1:10 PM he was 1lb 4ounces (25weeks). From the start, although in the NICU, he did very well. Soon more and more devices were removed or turned down. He made great progress.
Life for a preemie is often 2 steps forward one step back and is not without its good days and bad ones. But on the whole, for being so young and small, he was doing Outstanding and was the talk of the staff at the hospital. We were very proud and grateful. At 9:00 PM on March 10th I called Sammy's nurse to see how he was doing. The nurse said that he was doing great. I asked about his weight and was told he just made it to 2lbs. We were happy. At 4:30AM we received a phone call telling us that Sammy had developed something called necrotizing entercolitis or NEC. A sickness that attacks the small intestine. This was life threatening and he would be transported to Children's Hospital for possible surgery. At 6:30AM Children's called to go over the situation and get approvals for surgery. Later that day he underwent surgery. The surgeons examined his intestine and decided not to remove any damaged or dead intestine at that time. They left his stomach open to relieve pressure in the hope that this would allow the borderline damaged intestine to heal. They knew at that time that the long term prognosis would not be good if they removed all that they suspected as bad. They would wait and see. Unfortunately after a day it become clear that most of the intestine was dead and that they would need to remove it. He went back into surgery. The small intestine is the most important organ for growth and health. It is the organ that takes food and converts it into nutrients for the body to live. A person cannot live without a small intestine. Sadly, almost all of his small intestine had to be removed. A transplant is his only option. Unfortunately, he will not be a candidate for some time. This is because of several factors. There is a small pool of suitable donors and most small or preemie organs cannot be transplanted successfully. He will have to be about a year old before it is possible. He can receive nutrition through an IV and grow and be sustained. Unfortunately the solution that they give him to live is very hard on the liver. Most people can only last a few months on the solution before liver failure.
Because he has to receive the solution through an IV there is always the risk of infection or of not being able to find a suitable vein. If he is able to get to the Medical Center in Nebraska, they have done 42 Transplants and only 1 has died. They have a new way of stopping the TPN Nutrient from killing the liver. They use a substance called OMEGAMEN. It hasn't been approved by the FDA yet, but has been used with at least 5 babies and has saved all their lives. If Sammy is able to get to Nebraska he has a great chance of survival. Still he has a long road ahead of him.
Your time, efforts and prayers are so appreciated. Thank you. Kelly, Tom and Family
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