tag:blogger.com,1999:blog-2545638500873532888.comments2023-09-09T05:04:16.997-07:00RUGLESS BOYS WISKOTT ALDRICH SYNDROMESusanhttp://www.blogger.com/profile/03519013013243589301noreply@blogger.comBlogger39125tag:blogger.com,1999:blog-2545638500873532888.post-3839342759407147742015-04-21T21:26:56.901-07:002015-04-21T21:26:56.901-07:00Hi Susan
I work for Channel Seven and was hoping t...Hi Susan<br />I work for Channel Seven and was hoping to talk to you about a story which has just appeared in the UK press on a news gene therapy treatment over in Europe - http://www.telegraph.co.uk/news/health/news/11553415/New-era-of-medicine-begins-as-first-children-cured-of-genetic-disorder.html<br />I was wondering if anyone was receiving the treatment here! <br />I am a senior producer by the way and can be contacted on either jitters@seven.com.au or 02 8777 7921. All the best Julia TimmsAnonymoushttps://www.blogger.com/profile/12688144172462775898noreply@blogger.comtag:blogger.com,1999:blog-2545638500873532888.post-25804505045237473992012-05-23T06:12:13.040-07:002012-05-23T06:12:13.040-07:00Hi Susan,
It is truly amazing to see how you mana...Hi Susan,<br /><br />It is truly amazing to see how you manage with the myriads of constant issues that you go through with your boys. Your positive attitude and outlook is wonderful!<br /><br />I hope that your checklist of items for the boys lessen with time and that you can get some reprieve. <br /><br />Take care.<br /><br />SumathiSumathihttps://www.blogger.com/profile/12027074463385778095noreply@blogger.comtag:blogger.com,1999:blog-2545638500873532888.post-73562033445561664922011-11-10T08:17:22.967-08:002011-11-10T08:17:22.967-08:00Hi Susan,
I am a French researcher and have read y...Hi Susan,<br />I am a French researcher and have read your blog with great interest. My colleagues and I are working on Wiskott Aldrich syndrome. We are testing gene therapy as a strategy to treat this disease. This would be an alternative to cord blood or bone marrow transplant, which is not always available. Our efforts are supported by funds from the French Telethon which sustain a large variety of research programs on rare diseases and is oganized by the French Muscular Dystrophy Association. As our activities are very much dependent upon public generosity, we feel obligated to receive the public in our laboratories and welcome many visitors throughout the year. We show them our facilities and explain how the projects are progressing and how their money is being utilized. We receive school children, patients, parents, various associations,journalists either specialilsts or lay persons. I am often asked to talk about Wiskott Aldrich syndrome and like to show some pictures of patients. I find that your blog is tremendously helpful in that regard, as it provides a concrete face on this disease and shows evidence of the severity of the condition. I would like to ask your authorization to use one picture of your son Zac in intensive care after his transplant for my presentation. This image would be used in presentations to the public. I would cite your blog or leave it anonymous as you wish. I have noticed your disclaimer on the blog and would perfectly understand if you refused. However, I hope that as you wish to discuss your experience publicly, you may accept to help us with this testimony. Many thanks in advance and I wish you all the best with your family. <br />Anne Galy<br />galy@genethon.frAnne Galynoreply@blogger.comtag:blogger.com,1999:blog-2545638500873532888.post-77618935042393085302011-10-11T06:08:46.120-07:002011-10-11T06:08:46.120-07:00Hi Susan,
Sending you many, many smiles and a big ...Hi Susan,<br />Sending you many, many smiles and a big hug as well. With everything that the kids and you are going through, it is amazing to watch your strength and feel your love for the children.<br /><br />Wishing you and the boys the very best.<br /><br />Take care,<br />SumathiSumathihttps://www.blogger.com/profile/12027074463385778095noreply@blogger.comtag:blogger.com,1999:blog-2545638500873532888.post-83283998679770120002011-07-03T20:05:06.499-07:002011-07-03T20:05:06.499-07:00Hi
my name is Jenna and I came across your site. ...Hi<br />my name is Jenna and I came across your site. ur boys are amazing, courageous, strong and determined fighter. She is a brave warrior, smilen champ and an inspirational hero. I was born with a rare life threatening disease, and I love it when people sign my guestbook. www.miraclechamp.webs.comJennahttp://www.miraclechamp.webs.comnoreply@blogger.comtag:blogger.com,1999:blog-2545638500873532888.post-81871224648194864042011-04-17T20:42:49.854-07:002011-04-17T20:42:49.854-07:00Hi Susan,
I am sorry that you have had such a roug...Hi Susan,<br />I am sorry that you have had such a rough few months, particularly with the school. It must be so frustrating, tiring and just plain hard to cope with on an everyday basis. I am glad that the school has begun to turn around and hopefully will make things a bit easier for you.<br /><br />With many prayers and best wishes to you and your boys. Hang in there.<br /><br />SumathiSumathihttps://www.blogger.com/profile/12027074463385778095noreply@blogger.comtag:blogger.com,1999:blog-2545638500873532888.post-77179478957511915262011-01-12T17:09:22.699-08:002011-01-12T17:09:22.699-08:00Hi There Susan,
I hope you are ok you are so stro...Hi There Susan,<br /><br />I hope you are ok you are so strong Even though we have not meet I take pride in having spoken to you and being able to share in your story. I hope Zac is ok and James here is to a good new year for you and the problems start to fall away and only good happens to you and your family.<br />SallyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2545638500873532888.post-57264768042367394972010-11-29T10:46:26.685-08:002010-11-29T10:46:26.685-08:00Susan, reading about James just breaks my heart.. ...Susan, reading about James just breaks my heart.. I wish children were taught to be more tolerant of others and sympathetic, instead of bullying because their parents haven't taken the time to explain to them something they don't understand!! Please keep us posted of Zac and James progress.. Wishing you the best!RM - InBoundMarketingPRnoreply@blogger.comtag:blogger.com,1999:blog-2545638500873532888.post-69328784049458874572010-05-28T02:52:37.244-07:002010-05-28T02:52:37.244-07:00Hi MRS S...
I can see your month is still up and d...Hi MRS S...<br />I can see your month is still up and down..<br />I'm Thinking of you but we all know you by now Mrs S never giving up never tacking NO for the answer.<br />I hope Zac's CT Scan comes soon and it shows NOTHING for you mate.<br />Cheers my special friend<br />KD Lang... LOLAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2545638500873532888.post-88633926578821542882010-05-28T02:49:15.329-07:002010-05-28T02:49:15.329-07:00Your Story makes me feel like crying. Your story a...Your Story makes me feel like crying. Your story also makes me smile to see that there is still wonderful parents out there doing what they should be doing. Loving your Child. You have much strength more than me Lady Susan. I hope both your boys are doing doing well and your life gets better..<br />Your boys are blessed to have a mother like you as you are blessed to have two strong boys too.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2545638500873532888.post-26510016023545578612010-04-29T14:14:14.232-07:002010-04-29T14:14:14.232-07:00Susan, I hope the CT scan is done and shows health...Susan, I hope the CT scan is done and shows healthy lungs. Poor baby. His behavior seems a little odd. I hope he will outgrow everything and soon be the happy child he deserves to be.Aimeehttps://www.blogger.com/profile/13851001723699650438noreply@blogger.comtag:blogger.com,1999:blog-2545638500873532888.post-53732561685257971022010-04-09T08:16:24.128-07:002010-04-09T08:16:24.128-07:00Hi, Susan - thanks for checking on David. Oh, the...Hi, Susan - thanks for checking on David. Oh, these poor little boys. My heart is sad today and aches for their complete healing. I hope your little boy bounces back. I love to read about your hope..."that the doctors are wrong." You have given me so much hope (through the healing of your first son) and a better way to view things. Your courage and spunk are sure to heal your son's problems.<br /><br />Hugs from across the seas! Love you!Aimeehttps://www.blogger.com/profile/13851001723699650438noreply@blogger.comtag:blogger.com,1999:blog-2545638500873532888.post-87931086881801834772010-01-29T13:38:15.595-08:002010-01-29T13:38:15.595-08:00Hi,
I'm new to your blog and I am amazed to w...Hi,<br /><br />I'm new to your blog and I am amazed to what your family is going through. I hope all is well and I too am hoping for no more Arrests.<br /><br />Best,<br />Hua<br />Director of Bloggers<br />wellsphere.comHuahttps://www.blogger.com/profile/04703549526338294520noreply@blogger.comtag:blogger.com,1999:blog-2545638500873532888.post-72354257057898502582010-01-22T23:00:42.573-08:002010-01-22T23:00:42.573-08:00Hi! I did not know he had the operations. I hope ...Hi! I did not know he had the operations. I hope the removal of the tubes was a positive thing. He must be eating adequately. Keep up the sign language. All of my children learned sign b/c it's easier to communicate with a baby/toddler who cannot speak yet. My grandparents were deaf, from Scarlet Fever, so my first language was sign language. My mother was an professional interpreter for years. <br /><br />I haven't checked your blog in a while. With our US holidays and the new year, time slipped away from me! <br /><br />I hope you are all doing well.Aimeehttps://www.blogger.com/profile/13851001723699650438noreply@blogger.comtag:blogger.com,1999:blog-2545638500873532888.post-75428381593149533282009-09-20T23:25:21.552-07:002009-09-20T23:25:21.552-07:00Hi, Susan! Thanks for the comment about David'...Hi, Susan! Thanks for the comment about David's 3 yr anniversary. It's nice to hear how your son is doing and looking at the photos. <br /><br />You are heading into summer. Do you have any summer plans? I hope you have a lovely spring/summer.<br /><br />Take good care!Aimeehttps://www.blogger.com/profile/13851001723699650438noreply@blogger.comtag:blogger.com,1999:blog-2545638500873532888.post-72330327902119232522009-04-26T05:04:00.000-07:002009-04-26T05:04:00.000-07:00OK. Now your turn! How are things going with you...OK. Now your turn! How are things going with your little Zac?Aimeehttps://www.blogger.com/profile/13851001723699650438noreply@blogger.comtag:blogger.com,1999:blog-2545638500873532888.post-77029498986434973792009-04-19T08:40:00.000-07:002009-04-19T08:40:00.000-07:00Hi, Susan- Just checking in to see how your little...Hi, Susan- Just checking in to see how your little Zac is doing. I thought you mentioned he had a bone marrow biopsy. Have any tests given you more direction or insight?Aimeehttps://www.blogger.com/profile/13851001723699650438noreply@blogger.comtag:blogger.com,1999:blog-2545638500873532888.post-26465585279107828302009-02-26T21:50:00.000-08:002009-02-26T21:50:00.000-08:00Susan, for some reason I cannot find your email th...Susan, for some reason I cannot find your email that you just sent me. I wanted to say that the doctors told me if a person does not fully engraft then WAS can return. Another reason for small platelets is that GVHD is getting really bad. I was told today that the spleen does not work as effectively when on long-term immunosuppressors and it can "chomp" some of the platelet off making them appear small. I have seen may people on my GVHD board who are having a hard time controlling their platelets when they have a GVHD flare up. Please email me again to let me know what the doctors say. You sounded really alarmed. I hope you got some answers and can share them with me.<BR/><BR/>Thank you for your friendship,<BR/><BR/>Aimee McNallyAimeehttps://www.blogger.com/profile/13851001723699650438noreply@blogger.comtag:blogger.com,1999:blog-2545638500873532888.post-82519075359124580782009-02-21T11:20:00.000-08:002009-02-21T11:20:00.000-08:00Just crying my eyes out after visiting your blog a...Just crying my eyes out after visiting your blog and hearing LeAnn Rimes sing "How Do I live Without You." I think I'll use that for David's next birthday video. Hope you all are doing well. Haven't seen an update in a long time.<BR/><BR/>Aimee<BR/>www.davidmcnally.blogspot.comAimeehttps://www.blogger.com/profile/13851001723699650438noreply@blogger.comtag:blogger.com,1999:blog-2545638500873532888.post-6062007258643391842009-01-16T14:27:00.000-08:002009-01-16T14:27:00.000-08:00Oops - that's tmpsk@austarnet.com.auSueOops - that's tmpsk@austarnet.com.au<BR/>SueAnonymoushttps://www.blogger.com/profile/17877038380162073988noreply@blogger.comtag:blogger.com,1999:blog-2545638500873532888.post-33158323692687115292009-01-16T14:26:00.000-08:002009-01-16T14:26:00.000-08:00Hello - I have to say Hello, can't believe there a...Hello - I have to say Hello, can't believe there are other WAS boys in Australia! My son Mackie was finally diagnosed with WAS last June. He is 14 (I know!) and while he has had major problems since he was a baby he has been misdiagnosed as having ITP since that time. Hade a splenectomy at 41/2, continual ear infections and now has damaged speech as a consequence, many other viral and bacterial infections, etc etc. Cannot believe there are other WAS boys in Australia - would love to talk to you! We are struggling with the transplant / no transplant decision at the moment (brother is a match but risks are apparently much highr because Mackie is older). Hope I hear from you - if you like my email address is tmpk@austarnet.com.au<BR/>We live on the Gold Coast but grew up on the Central Coast and both our families are still there (small world)<BR/>Hope to hear from you,<BR/>SueAnonymoushttps://www.blogger.com/profile/17877038380162073988noreply@blogger.comtag:blogger.com,1999:blog-2545638500873532888.post-78105088745501752152009-01-15T01:55:00.000-08:002009-01-15T01:55:00.000-08:00Hello Susan,I have read your blog and have followe...Hello Susan,<BR/><BR/>I have read your blog and have followed Zac's path which has been a long and hard for you I can see. I'm so happy that you are home with your little boy. I hope everything turns out ok for you and your family. Just wanting to let you know that our family is always thinking of you and you are in our prayers everyday.<BR/>BethAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2545638500873532888.post-75491648890731462342009-01-14T21:27:00.000-08:002009-01-14T21:27:00.000-08:00Hey suz missing u already.....have u got all of ja...Hey suz <BR/>missing u already.....<BR/>have u got all of james uniforms for school yet? <BR/>how is zac do u no what the lump in zac's ear is, and do you no if he has brain damage yet... missing u all love bronteAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2545638500873532888.post-68155266720144482372009-01-08T01:43:00.000-08:002009-01-08T01:43:00.000-08:00Hi Suz'sSay hello to James and everyone be home so...Hi Suz's<BR/><BR/>Say hello to James and everyone be home soon Love ya<BR/>BronteAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2545638500873532888.post-16293141893470638622008-12-13T21:48:00.000-08:002008-12-13T21:48:00.000-08:00What a beautiful tribute to Zac as he gets stronge...What a beautiful tribute to Zac as he gets stronger and well. So hard to see our children suffer. With a loving mom and the miricle of medicine and devoted docotrs I believe Zac will be a strong little boy soon. I lost my son 5yrs ago at the age of 43 yrs old. He's an Angel now looking over all those who need his prayers. Angels are magic.<BR/>Have a blessed Christmas and know you are in my prayers. Hugs to Zac.Anonymousnoreply@blogger.com