Hi Everyone

[Linda22]

I would like to say a sincere "Thank you" to all of you for your kind messages and condolences. My mission at this stage is to try and start a foundation in my son's name to make people more aware of WG. After Brandon's death we started asking ourselves how many other people have died due to this syndrome and have never been diagnosed properly, because on my son's death certificate it had cause of death "respiratory failure". I am also sure that if we had not done our own research and being so persistant with the doctors we also would never of known. I still feel that the doctors did not have a clue as to what they were dealing with and I will never know now if it would of made a difference if they had started treatement earlier. People as well as the medical profession need to be more educated on WG and the laboratories need to be more equiped to get results back a lot sooner, especially here in South Africa. It is pathetic to have to wait so long for results when someones life is in danger.
I will keep everyone posted with regards to the foundation as soon as I can get someone to assist me because I don't even know where to start, But I will do it because I know it is what Brandon would of wanted!!!!
You are all in my prayers and continously in my thoughts and I pray that you all combat this syndrome

Linda
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[Linda22]

Dear Alysia

Thank you for your reply on my son's story and I am so glad that I found this forum. I am glad to find people that understand what Brandon went through and sometimes it stills just feels like a nightmare that I will wake up from soon and then reality hits. The pictures that keep on coming up in my head is him been in ICU on a ventilator, that will never go away!!!!

Linda

[mishb]

Hi Linda,

I am so sorry that I am only catching this thread now, and I am also sorry and saddened that Brandon had to go through what he did.

I send my condolences to you and your family.
Brandon is now pain free.

I read on a post, on a Lupus site actually.........someone asked, why does it take so long for us to be diagnosed correctly by our doctors, and a reply was

"I asked my doctor why it took 2 years for me to get a diagnosis for Lupus and his reply was that a normal General Practitioner would only see one case of Lupus in every 100,000 people, or more, that they see, and therefore it is not in the forefront of their minds every day"

This made sense to me - and my guess, for us and Wegeners, is that they would only see one case in 400-500,000 people they see (even more)- I think Australia (for a local GP) would be one in millions (since I am the only one in a very large medical clinic I attend) and therefore it could really explain why they are trying to treat for sinus infections or kidney conditions, as an individual ailment, before even thinking of WG. I know Phil will correct me on my numbers but in Countries like Sth Africa, New Zealand, Israel etc, it could even be one in millions before they see another case - in places like Sask, Canada, where Phil knows of a few people in his town - then the GP's should be ashamed of themselves for not diagnosing quicker (if that is the case).

I know this is no excuse and certainly wont ease any of your pain and loss, but I do hope things can get better for you as Brandon's foundation gets established.

Take care

[mzschaumkell]

Hi Linda, you are such a brave and courageous woman to post this story.

I cant imagine the pain and heartache you are going through. This is a horrible disease and if there is any light in a terrible situation it is the fact that you can use your sons story to promote awareness of this disease so no other family has to go through all the pain you are feeling!! Try and keep the positive memories of your son at the forefront of your mind and remember the good times he shared with your family...

Jo

[Debbie C]

Linda, like everyone else on here I want to tell you and your family how sorry I am for the loss of your son ,especially at such a young age. I know you or your family will never get over this but find peace in knowing he is no longer suffering and is in a much better place,watching over all of you and there will be a day when you are together again. In the meantime stay strong ( like you are ) and embrace and love your other children everyday. And thank you for sharing your story,it puts us all in check and be grateful for what we have.I hope you feel you come back and share your grieve or joys anytime.
I will pray of you and your family to find some peace.

[Alysia]

Dear Linda.
thank you.
You remindes me that it is a miracle I'm alive. and many others here. it makes me thanks God for just "breathing".
Making foundation in memorial of Brandon is great idea, it can help save others lives, and it will be something like "keeping Brandon alive" in some sense.
It is a nightmare while awake. please continue writing. the more you share, the more you can "breath" for yourself and for your other children.
If you want, we can all think with you how and what to do about the foundation.
Im sending you my prayings and hug

[annekat]

Yes, the foundation would be another great step in creating more awareness of WG. There are others on here working hard to promote awareness of WG and other life-threatening AI diseases. You might especially check out Marta's blog; not hard to find on here from the main page, but can't say exactly how from here. Marta will have lots to say when she reads this thread. Also you can go to the Weggie map link at top of every page and see all the people worldwide who have placed marker "pins" for themselves. There are candle markers reserved for those who have lost the battle, and you may add one for Brandon if you wish. You are in my thoughts and prayers, and may all this help the healing process for you and your family.

[Barbara N]

Dear Alysia

Thank you for your reply on my son's story and I am so glad that I found this forum. I am glad to find people that understand what Brandon went through and sometimes it stills just feels like a nightmare that I will wake up from soon and then reality hits. The pictures that keep on coming up in my head is him been in ICU on a ventilator, that will never go away!!!!

Linda

Try and do something that will make Brandom's life count, stand out in a crowd. I don't know what but some kind of concert or book or children's rare disease party for children all over the world. We wouldn't want to scare the children but some kind of WG awareness day should be thought of especially for the young who think they can do anything. It would be a good job for the children in Juvenal detention and may be they would stop throwing their lives away stop throwing their lives away and realize the importance of living every day to it's fullest. A prize could be given in honor of -Brandon for an essay on WG or some other VF or autoimmune disease. I am sure we could fingda company willing to give a cash prize for the best essay and it is all good publicity for them and also a tax right off. I have run a chatrity for oveer 20 years now and there is no end to the help available if you are willing to dig through the archives. The nightmares will get better but they will never go away completeley. It is a scar too deep to disappear but it does fade especially if when you can you start volunteering for children with WG. They need you, many do not have parents or their family doesn't understanding the illness and all of the complications, The information needs to be kept at an age appropriate level, but the kids could put on plays and a learn during this process the importance of this disease . Let yourself heal for a while because it all takes time, then work like fury to make Brandon proud. I am so sorry for your loss, Barbara Napier

[marylz]

Thank you, Linda, for sharing the story about your son. I am so sorry for your loss. It truly is heart-breaking. Be strong for your other children and yourself and please visit the forum frequently. You will find an abundance of support from these kind people.
Mary

[JeanMarie]

Linda, I am so sorry for the loss of your dear son. I will keep you and your family in my prayers.