Finding Answers to Heterotaxy, Polysplenia Syndrome

A 10 year old girl living with Heterotaxy - Polysplenia... Join me in my quest to find answers to my questions as I learn about heterotaxy.

Wednesday, October 8, 2008

Cold and Flu Season

Cold and Flu Season is here. Chloe and Brady are both getting their flu vaccine Friday morning.

Posted by Unknown at 8:40 PM

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With awareness comes understanding and with understanding comes change.

From a special friend in Canada (Laura)

“God must trust that you are the right mother to care for her, to love her and to teach her. God only gives us what we can handle...or from what we can grow and learn. ...perhaps you will help one other person and that is you’re calling as a mother of a very special and unique little girl. Who knows? But I believe god only gives us special little ones when we are special too. Hold onto that my dear friend.”

HELP SPREAD THE WORD ABOUT HETEROTAXY AROUND THE WORLD

Heterotaxy Links...And the ones I Follow

4 Broken Hearts: A mother of three children with complex heart defects due to Heterotaxy Syndrome & her first grandchild, who also is affected.
A mother's journey
Always Plus One
Ava - The story of a baby girl with Heterotaxy who died only 22 hours after birth.
Baby Pierce
Baby Prinz
Beibhinn - Heterotaxy Baby from Ireland
Drawing Heart Project - Please check out this amazing blog of a heterotaxy mom who draws pictures of her son's heterotaxy. Please join her on her quest to spread awareness
Fishing for Zebras - Mom who lost her daughter
Helping Hallie - A very special little girl with Heterotaxy Polysplenia Syndrome. A must read blog!
Heterotaxy - NIH
Heterotaxy Syndrome - Logan
Heterotaxy, Polysplenia
Jacobs Story of Miracles - Living with Heterotaxy
Justin and his Mom
Little Ryker's Journey
Living with Heterotaxy - A young woman in her 20's living with Heterotaxy. She is also starting a support forum for adults with heterotaxy on line
Lunatic Fringe
Marek's Blog
Masons Fight 4 Life
Miss Molly Moo
Morning Ramble
Norah - Little girl with Heterotaxy, Polysplenia
November 2, 2009 - Riley is offically listed for his heart and double lung transplant
Rachel Amariah
Studies at NIH
Sullivan Sideroads - A great blog to read.
The Little Fighter
Zoe's Story...One Special Heart: The Journey of a loving couple and their 2nd child - a simple life complicated by congenital heart defects

CHD (congenital heart diseas) LINKS

Heart Badge Org.
Someone Else's Life
CHD UK Website - lots of helpful information on CHD
Cora's Story - She now saves lives!
Systemic to Pulmonary Artery Shunting for Palliation
Living for Eden

Primary Ciliary Dyskinesia Links

Justin & Alexander

Find them on Facebook

Families of Children Hospital Boston - closed private group
Heterotaxy Ireland
PCD Foundation on Facebook
H20 Heterotaxy Hope Org. on Face Book
The Heterotaxy Network on Facebook

Non-profits

Aiden's Angels Inc. - Aiden is a 2 year old little boy with Heterotaxy and CHD. His mom is a nurse, his dad a pharmacist. The non-profit organization to help families in the Central Kentucky area with children born affected by congenital heart disease.
Heterotaxy Hope Org. (H2O) (mission statement included) is a non profit 501(c)3 organization dedicated to strengthening the Heterotaxy community through networking, social support, and raising awareness of Heterotaxy among medical professionals.
Keegan's Spirit Foundation (mission statement included)is a 100% volunteer, 501(c)(3) tax-exempt organization centered on providing hope to those with congenital heart disease. We have several primary programs delivering scholarship funds to students with Congenital Heart Disease in the Greater Cincinnati area, information on a rare disease called Heterotaxy Syndrome, patient outreach and research funding.
Masons Fight 4 Life and it's mission statement..MasonsFight4Life has a mission to spread awareness and support to families dealing with Heterotaxy Syndrome and Congenital Heart Disease..
PCD Foundation & it's mission statement..The PCD (Primary Ciliary Dyskinesia) Foundation seeks to promote research, increase public awareness, and provide information and support services for individuals with inherited ciliary disorders. .
The Avril Lavigne Foundation is a U.S. registered 501(c)(3) charitable organization. Over 9 million children in the United States have special health care needs. Providing children and youth living with serious illnesses or disabilities with the support they need to overcome their individual circumstances and achieve their dreams.
The Heterotaxy Network & it's mission statement.The Heterotaxy Network was founded in 2010 to promote education, research, support to families afflicted by Heterotaxy all around the globe...

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DISCLAIMER

It is not my intention to provide specific medical advice to users of this website or any other website; instead I provide users with information for people to understand what it is like having a child with a disability, syndrome, or disorder.
I strongly urge users to consult with a qualified health care professional for diagnosis, treatments and answers to their personal medical questions.

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Please make special note, most of the information in this site was found on the net or in pamphlets. Any copyright infringement is purely accidental, I try to add links where necessary. Any conflicts, infringements, or violations pointed out to me will be corrected. Thank You.

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