New to the website

[Stacey]

My son Riley aged 3 was diagnosed with HUS last June when he suddenly became very ill. He was immediately put on dialysis. Doctors thought that his kidney function would return and that it was e-coli. When this didn't happen i learnt how to dialysis and brought him home. We recieved test results just a month ago which confirmed Riley has atypical-HUS with complement factor H. Because Riley went straight to ESRF the only way forward for him is a combined liver-kidney transplant. This should rid his body of the gene to avoid reuccurrences of aHUS and give him kidney function back. This terrible disease affects so many different people in different ways. Unfortunately for my baby it came as sever as possible. I pray to God that my son has a bright future and also for all the other children and parents caught up in this. I would really like to hear other peoples stories as sometimes i find it hard to cope. I would like to be in contact with other mums who are going through what we are x

[Melissa Hearn]

Hi there, Bryan doesn't have Factor H, (he has no known mutation - all testing has come back negative) however, he is on Soliris and it has worked miracles for him. He goes in once every 3 weeks for an IV infusion of the drug and continues to have normal kidney function since starting the drug. He is taking it off-label, however I hear rumors in the mis that a pediatric trial is now in the works. You definitely should have your doctor check it out. There is information about how your doc can contact the CMO of Alexion (this was very persuasive for our doc), as well as contact information for other nephrologists, who would be happy to talk to your doctor regarding Soliris and a host of other topics on the Doc to Doc registry, including Bryan's doctor - Dr. Julius Sherwinter. Good luck!!!! Know that we are praying for you!

[Jodi Kayler]

Soliris is a simple IV infusion (Coen gets in once a month). It only runs over 30 minutes. At the same appointment, he gets his labs done to check blood counts. Coen has not had a line in for over a year (he's 7 and had a line for over 4 years). He says it is the best he has felt his whole life. He tells everyone he is not sick anymore and that he doesn't mind getting poke once in while--compared to what he used to have to do. The poke for the IV doesn't even phase him. As soon as the infusion is done, they remove the IV and he is as good as new.

A life after transplant is not easy and problem free. There is lifelong medications, bloodwork, ongoing risk of rejection and often treatments such as pheresis to prevent rejection. A kidney transplant is much more successful and manageable than a double transplant. A liver transplant is very tricky and the chance for rejection or complication is high. If you body rejects a kidney, there is opportunity for it to be removed and you can be placed back on diaylsis. The body can't live without a liver, so if the transplanted liver is rejected, there is no positive outcome.

No matter the treatment, these sweet kiddos have a lifetime of challenges. There is no cure or easy answer. It has taken me years to come to terms with this. But these kids who face this disease are truly special and have the strength to face whatever challenges their future throws at them.

[Phyllis Ann Talbot]

Stacey - hi there - yes - it's an IV drug but that doesn't mean your son would need a line (as in a hemo line) - it's only administered once every 2 weeks (some kids are even stretching that out to 3 or 4 weeks) so he'd have to go into your hospital or clinic and just get an IV started every 2 or 3 or 4 weeks to get the drug.

[Stacey]

Is it only an IV drug though? So my son would have to keep a line forever? Sorry new to all this

[lisa ann peterson]

look into the solaris forum on this website it would be very helpful.. also it is a drug that blocks off the compliment system.

[Stacey]

I don't know very much about soliris? Does it stop the gene from working altogether. I want the best possible chance and future for my son so i am willing to look into more things. Obviously i didn't know very much about treatment plans and things before coming on here. I have already rang Riley's consultant in Manchester and he is going to look into Soliris for me and get back to me next week. I would be very grateful if someone could open my eyes some more about what Soliris is all about xx

[lisa ann peterson]

my lil miss has had AHUS with a factor H mutation for two years now... i think that you should read some of the other kids stories with factor h mutation..god bless and please look into all your options before deciding on the kidney liver transplant

[Sylwia Antkowiak]

hi Stacey,
Welcome to the site, I thought there are not many children affected by this terrible disease in the UK but the community seems to be growing bigger. We are from London and its my 6 year daughter that is affected. She's got Factor I mutation and was diagnosed about 2 years ago when she was 4. She is a patient of Great Ormond Hospital and we've got wonderful doctors over here. Anyway about a year ago we considered double transplant as well and initially I was quite excited about it as as you say that could cure the disease once and for all. But than the nasty statisctics hit me, I was told there is about 15% mortality rate and that's even if the patient is stable. We personally are not willing to take this risk. Maya is stable now, she is on peritoneal dialysis and although its lots of work for us she can go to school as normal. We try to live as normal live as possible , we travel a lot with tons of equipment etc.
Soliris is an option for as and my doctors are in contact with Alexion uk. They put Maya on the list already for the trials that will start soon on pediatric patients. I think it still has to go through the etics committee that will take 2-3 months or so. Then we will go for the transplant with the soliris. I feel that currently this is the least risky option that could give us our lives back.
If you have any questions just ask. I think your doctors can get in touch with GOSH and my doctors to learn more about soliris in the uk etc. And just as Cheryl said, if Riley is stable on dialysis you don't have to rush into anything, a lot of things are happening now in terms of research and I think it will get better for our children. All the best for your family and Riley.

[Cheryl Biermann]

Welcome to this site Stacey,

I strongly urge you to advocate for Riley, because he is stable on dialysis, you have time and do not need to rush into a double transplant. Please look at the Burke's experiences with their precious older, child, Hunter and then have your doctors pursue the doctors on the doc to doc registry on this site located on the home page.

Our son, Nathan, is Factor H related and the Soliris/kidney transplant is what we are also seeking. Now with Soliris the kidney/liver transplant option is the least attractive and most risky of all the options, including staying on dialysis.

If you NEED to do a liver/kidney, it should be only after less risky, more successful treatments have been exhausted first.

Good luck, we look forward to hearing more and will be praying for Riley.

[Destiny Floyd-Rakes]

Hello My name is Sally my daughter went and is growing threw the same thing. We just found out today that she also has the factor H. We will pray for you and your family. If you have any questions or vice a verse just let us know.