wainaina muiruri
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wainaina muiruri's Discussions

Grieving

Started this discussion. Last reply by wainaina muiruri Sep 10, 2015. 6 Replies

Kamau Wainaina.My son.My friend.Rest In Peace.Continue

FibroGen Receives FDA Clearance to Proceed With Clinical Study of FG-3019 in DMD

Started this discussion. Last reply by David Aug 3, 2015. 1 Reply

"FG-3019 shows a positive effect on fibrosis in clinical studies of DMD patients, and inhibits or reverses the build-up of fibrosis in their skeletal muscle":Quite a milestone,this one.From the look…Continue

Cough Assist Devices

Started this discussion. Last reply by Andrea Cleary Mar 24, 2015. 11 Replies

Hello Dear ParentsAre there cough assist devices that are not too costly?My son is now having problems clearing fluids from his lungs,and the models i find on the internet are going for thousands of…Continue

Eplerenone & spironolactone

Started this discussion. Last reply by wainaina muiruri Jan 29, 2015. 6 Replies

Hello Parents:Is there a significant difference between Eplerenone and Spironolactone in terms of any side effects?Thank you.Continue

 

wainaina muiruri's Page

Latest Activity

Cecilia grandson left a comment for wainaina muiruri
"Employment opportunity in Pan Pacific Hotel, The manager of Pan Pacific Hotel Canada, wants suitable personal in which our hotel needs men and women who can work and live in Pan Pacific hotels here in Canada . Our hotel will be responsible for the…"
Mar 18, 2016
wainaina muiruri replied to wainaina muiruri's discussion Grieving
"Dear Parents,thank you for your prayers during these difficult period for our family and the DMD fraternity.."
Sep 10, 2015
Shawn replied to wainaina muiruri's discussion Grieving
"I'm so sorry, Wainaina. My family is praying for you."
Sep 3, 2015
David replied to wainaina muiruri's discussion Grieving
"I'm so sorry, Wainaina"
Sep 2, 2015
David replied to wainaina muiruri's discussion Grieving
"They who stand with breaking hearts around this little grave, need have no fear. The larger and nobler faith in all that is, and is to be, tells us that death, even at its worst, is only perfect rest...the dead do not suffer."
Sep 2, 2015
Trinh Nguyen replied to wainaina muiruri's discussion Grieving
"Dear Wainaina, My heart's with you and your family. Rest in peace, Kamau Wainaina."
Aug 31, 2015
wainaina muiruri posted a discussion

Grieving

Kamau Wainaina.My son.My friend.Rest In Peace.See More
Aug 29, 2015
David replied to wainaina muiruri's discussion FibroGen Receives FDA Clearance to Proceed With Clinical Study of FG-3019 in DMD
"Another company willing to run trial on non ambulatory subjects. I hope they have PPMDs full support!"
Aug 3, 2015
wainaina muiruri posted a discussion

FibroGen Receives FDA Clearance to Proceed With Clinical Study of FG-3019 in DMD

"FG-3019 shows a positive effect on fibrosis in clinical studies of DMD patients, and inhibits or reverses the build-up of fibrosis in their skeletal muscle":Quite a milestone,this one.From the look of it,looks like a pretty effective approach to contain the vagaries of MD.Big up from DMD communities to all the medical professionals who have spent years of their lives trying to get us a product that will give us hope and lives to our sons.  See More
Aug 3, 2015
wainaina muiruri replied to Mirtha's discussion No steroids ... Any other options?
"Hello Dakota.I trust you are well.Have you ever had temperament and weight problems with the steroids.I had my son on them but had to stop after two months because his weight shot up rapidly and he had a really bad temper.What can one do to mitigate…"
Jul 23, 2015
wainaina muiruri replied to Elie Feghali's discussion What is the cost of translarna?
"Well,i think i talk for most of us when i say not many will afford that high a cost.But let us remain hopeful."
Jun 5, 2015
wainaina muiruri replied to Elie Feghali's discussion What is the cost of translarna?
"Hello Peter.I trust you are well with your loved ones.How long is Translarna to be taken?For life or just for a period?Thanks."
Jun 3, 2015
Michelle Scaglione replied to wainaina muiruri's discussion Cough Assist Devices
"My son had pneumonia in 2012.  His cough was weak.  The cough assist provides enough force in and out to bring up the secretions down in the bottom of lungs. I have an Ambu bag and when my son was in the hospital with pneumonia I…"
Mar 24, 2015

Staff
Kathi Kinnett replied to wainaina muiruri's discussion Cough Assist Devices
"Andrea -  could you explain to everyone how you use the Ambu bag?  while everyone cannot get a cough assist, everyone can get an Ambu bag.   Thanks~ Kathi"
Mar 24, 2015
Michelle Scaglione replied to wainaina muiruri's discussion Cough Assist Devices
"If your son has a weak cough you need the cough assist.  If your son gets a cold and cant cough up his secretion he will get pneumonia.  You need to contact your dr to get a script with a letter explaining your sons needs."
Mar 24, 2015
danielle replied to wainaina muiruri's discussion Cough Assist Devices
"My son needs these things as well. his lung function is low so it is hard for him to cough enough to matter, we got a script for a incentive sparumter and a accapella machine. but the medical supply place wouldnt even try to get my insurance to…"
Mar 23, 2015

Profile Information

About me:
I am happily married and a father of two.I am a businessman,running a small business in Nairobi,the capital city of Kenya in East Africa.In love with reading.
About my family:
We were blessed with identical male twins in 2003.The elder of the two passed away in 2005 in a botched surgical operation in a national hospital over here tat was meant to rectify a small defect on his reproductive organ,something they were calling hypaspadia .He was anaesthesised and suffered a cardiac arrest before he was even operated on.My remaining boy was diagnosed with DMD recently.And the pain is immense.
Name(s) of child(ren)/individual(s) with Duchenne:
Kamau Wainaina
Age(s) of child(ren)/individual(s) with Duchenne:
7-12
City:
Nairobi

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Comment Wall (7 comments)

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At 11:54am on March 18, 2016, Cecilia grandson said…

Employment opportunity in Pan Pacific Hotel, The manager of Pan Pacific Hotel Canada, wants suitable personal in which our hotel needs men and women who can work and live in Pan Pacific hotels here in Canada . Our hotel will be responsible for the payment for his/her air ticket feeding and accommodations only, so if you are interest you can contact us directory at this below e-mail address link...with your C.V. EMAIL:employmentpanpacific@torontomail.com we look forward for your prompt reply. Thanks. From the Hotel manager. Mrs Cecilia Grandson.

At 10:45pm on November 10, 2012, Ambrish Kapadia said…
Hi Wainaina ,

Hope all going well at your end .it's a festival season for us here in India .Its our new year .

Do yo find any difference with Lisinopril and Spironolactone with your son .Still in Mumbai I could not find a doctor who would prescribe it for my son .

Rgds

Ambrish
At 9:49am on July 31, 2012, Andrea Cleary said…

Hello Kind Sir,

I believe you have mistaken my family for another, as we will not be travelling to Africa, though we would love to some day. I have always found the people of Kenya to be so deeply proud and regal, and always with a beautiful smile or easy laugh not far under the surface.

I was thinking about your twins and the tragedy of your boy passing during that surgery. If the boys are identical, then he also had DMD, no? In which case it may have been the anesthesia that caused his cardiac arrest, which can be a problem for our DMD sons. Our Simon also had an operation for an undescended testicle when he was 3, before we had a Duchenne diagnosis, and therefor there was no warning about the type of anesthesia used. His DMD symptoms began to show more immediately after the operation, and I strongly believe it was the anesthetic that exacerbated everything, simply because none of us knew yet that some types are dangerous for our sons.

How is Kamau recovering from the stroke? Blessings to him and your family Wainaina Muiruri.

Andrea from Montreal, Canada

At 9:23pm on June 29, 2012, Andrea Cleary said…

Wainaina,

How is your son doing? How are you parents doing?

I just read your "about me". I too was the victim of a medical error that nearly killed me, and I can only imagine the pain you must have endured that day and since. 

Wishing you all peace.

A.

At 7:42am on May 8, 2012, danielle said…
Im sorry to hear that you are going through this. It is tough but our kids teach us how to be strong and how to care for them. They dont expect us to make it better they just want us to give them our best and love them.
At 2:22pm on November 12, 2011, Ambrish Kapadia said…
Dear Wainaina muiruri,
first of all very sorry to hear about your twin boy's untimely demise..
Abt ACE and ARB inhibitors -i hv asked Nimi to share with me names and contact details of those parents in US and canada who are using these drugs on their little ones before any heart problems have been diagonised for them.
Once i hv any news from Nimi Langer on ppmd blog i will let u know.
In the meantime u can check with juan pedro arbullu of Lima Peru..He too is member here and giving lisinopril and spironolactone to his 6.5 yr old dmd son under guidance of a pediatric cardiologist since last 3 to 4 months .U can search
him on the forum and discuss with him further.
All the best and hv gr8 weekend.
Rgs ambrish
At 3:47am on March 3, 2010, yohannes getahun bizuneh said…
i am in ethiopia.21 years old with dmd
 
 
 

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