Guestbook

Two days ago, my sister died at the age of 35 from complications from Lymphangiomatosis and Gorham's Disease. She was ill from the age of 5 and only in 2002 were they able to determine the co-morbidity that included the lung disorder. She spent her life being shuffled from doctor to doctor, most having no idea how to do much more than keep her comfortable. She too had to fight to be placed on a transplant list and in May 2004 she underwent a bilateral lung transplant. With her underlying condition still present, and her phrenic nerve severed during surgical complication, it is nothing short of a miracle that she was still with us so many years after her transplant. She too founded an organization to raise awareness for orphan diseases and here in the US we have campaigned to champion organ donor pledges. She also married, and was loved tremendously. Everyone who new her was a better person I just want to share with you that you and your family and loved ones are not alone in your struggles. That my sister lived such a full life was a direct result of her life-saving transplant. Stay strong. Hope is everywhere.

hi rachael, my name is gemma, my 4year old son laylun has OB..( you may of read his story on breathtakers).... i would just like to say that you are an inspiration to anyone with an incurable lung diease, and such a brave young women.... i hope you get your transplant very very soon.. good luck.. lots of love gemma and laylun xxxxx

Hello Rachael... just read about you... keep fighting girl! I'm also wainting for a double lung - heart tx.... I have cf, A1ATD and a complete IgG1 deficiency... I'm 21 and I'm sure you can make it! just hang in there ;-)

Hi. It's a masterpiece. I have never thought people can have such ideas and thoughts. You are great. www.breathingislife.com – Super! By.

Good day. Thank you very much for that enlightening article By!

Wow! what an idea ! What a concept ! Beautiful .. Amazing …

Rachy, I think you are a brave girl,you've shown such grace, and very inspiring to everyone around you! I pray for you and know God is with you. Please know I will be thinking of you, I will pray for you as well. God bless, Chrissy

Hi, I just wanted you to know that you are in my thoughts and prayers. My son, Steven, passed away from complications from the treatment of Wegener's Granulomatosis. The disease was not caught in time. It is also a very unpredictable disease. He had significant scarring on both kidneys when it hit his lungs. He was in the ICU in Birmingham for almost three months. Only diagnosed two months prior. They did get the disease in remission but he got a very bad fungal infection in his lungs and with no immune system (it was knocked out by the chemo and steroids), he could not fight it. If you are hospitalized, fight to have a isolated private room to cut down on the infections. I do not agree that it is as rare as the medical community would like us to believe. I have met way too many people who have the disease, even children. I also believe that it is not always being diagnosed correctly. Please take care of yourselves and keep fighting. God Bless, Kathy In memory of Steven Peacock March 23, 1989 to March 22, 2001

hi girls Just wondered if natalie was ok and still with us as i logged on to see your updates and she has disappeared and so got worried even though we've never met i do feel for each of you girls and the thought of anything happening to either of you upsets me. Rachael i will keep fundraising as best i can and help nudge that target dvds closer to where it needs to be. Please let us know natalie is ok and how your doing too! All the prayers in the world Kim XxxXxxXxxXxxXxx

where has natalie disappeared to?? Logged on to see if there was any updates on you all and she seems to have disappeared. She is still with us isnt she!? I hope so. You girls are so brave. Keep up the hard work and rachael- i really do wish you all the very best with the fundraising. XxxXxxXxxX

Hi Rachy! I'm a Rachel too! I really hope that you get your trip to the USA and your lung transplant. I can't believe that they won't give you a transplant. Lots of love! Rachel no.2! xxxxxxxxxxxxxxxx PS - Will pray for you!

Hi Rachel, Hang in there, Your an inspiration to all of us, your in our prayers.

Hey there Rachael. Thanks so much for taking time to read my blog. I am so sorry to hear about your fight but you are totally amazing. I would like to help in some way that I can with your fundraising. There are many things I plan to do but in a fair bit of pain at the mo. I am hoping to raise funds by selling my unwanted gifts on ebay (he he!) so watch this space. Love lu xx

Hiya, I read about your story & me & my family wanted to try & help you straight away. I'm a singer-songwriter & so I've made a cd which i'm goin to sell for a couple of pounds & donate all the proffit to 'breathingislife' , i hope i raise a decent amount from them, i'm sure people at my gigs will fell the same as i do & do there bit to help you out. I'm going to put a link on my music myspace too, to this site, so hopefully that will make people aware of what's happening. www.myspace.com/nichardingmusic Anyway, i hope you get well soon. Love, Nic xx

Hi Rachy I have just found this site. I am so so sorry that you are so unwell. You have been my inspiration for 'Breathtakers' as you know and helped me understand more about OB and how to help Kiri (my daughter) with her struggle with it. Breathtakers will be sending a donation of course and also I will put link to this site on our website to try and raise some more money for you. Keep smiling your beautiful smile and believe. You will be in my thoughts and heart each day. Lots of hugs and love Lynne and Kiri

Hi Rachael, I read your article in closer magazine and i just couldnt believe that the doctors here in the UK cant or just wont do anything to help you! As one of the most advanced countries in the world im disgusted that noone is willing to give you the chance you deserve! I hope you raise the money you need, its an awful lot. I am going to set up a 'causes' invitation with a link to your website on facebook. If everyone it reaches donates just 1p its a start! My heart goes out to you, stay strong, laugh hard, be brave. I shall ask work if i can set up a collection box on my bar at work. with love, Lozie xxx

hi rachael, my name is nic (my nick name is lil nic coz i am small!lol!) i just been sat here reading the article in the closer magazine and o my god,i feel for you. what a strong lass you are,dont give up because allthough i have never met you,you sound like such a fighter.i am going to spread the word and get my fiancce to have a wip round at his work to donate to you (It's a BIG company!) i no what you must be going through on account for losing your contact with horses as i have my own and i hate it when i have a cold and cant see my baby so i no how you feel in that respect but for every thing else i cant evan begen to imagine. hang in there gal, if you believe you will succeed!! good luck!!xxxxx

Rachael, I have just come on your site after reading your article in Closer magazine (1-7th November) in order to make a donation. I was deeply saddened by what you are going through. I too believe that you would benefit from exposure on the likes of GMTV / This Morning.... Good luck Racheal, hang in there.... I will let many people know about this site. xxx

Hello Rachel, I have just come across your blog and am saddened by what you are going through. As a post lung transplant patient I have some idea what you are going through with the medications. Good to hear that you have had an interview with Closer Magazine. Could you somehow get onto GMTV or This Morning to make your case more publicised? This may bring in more funds. I'm just trying to think of something big that may get lots more money rolling in. I hope you aren't feeling too bad today and i send you all the wishes in the world.

Keep going Rachy. Thinking of you and really hope you get to the USA xxxx