Rising above Rheumatic Heart Disease: Patricia’s journey

The click clack of her high heels announces somebody is coming into the office. It is most likely our expected guest, Patricia Mwende, who is joining as an intern. She steps in with her smile ear to ear, almost instantly warming up an otherwise chilly morning.  We are glad to receive her; because the position she is filling needed someone but more specially because she has been through our program!

Patricia at her Desk in the CFACH office

Patricia was introduced to our program after years of agony with frequent fainting and vomiting.  She also had a never ending flu and headache and difficulty breathing. She was weak and dull and her stunted growth was obvious.

She was diagnosed with rheumatic heart disease at the age of 12 years and that began her journey in and out of hospital. Her situation was so dire, she sat the all-important Kenya Certificate of Primary School exam in hospital. Heart disease would not stop her from an impressive score that earned her a place at a good public high school.

In February 2010, she was excited to join high school. Her joy would not live long as conditions in the boarding school were not favorable for her health condition. This had her transferred from one school to another. Her high school years, scheduled to be four, ended up being six. It was in between these years that she also joined our program. She flew with her mum to Egypt for an open heart surgery.

The 25-year-old is the fifth born in a family of six. Her father is a bus driver and her mother is a farmer. Patricia had always dreamt of being a nurse but she missed her place at nursing school as her parents were not able to raise the needed fees. She enrolled for her second favorite, a Diploma in Health Records and Information Technology. She is currently working on her research paper Communication barriers faced by health care providers during service delivery to deaf patients. She is working on graduating this December! 

Patricia is an avid swimmer who enjoys giving back to the community. She is grateful that her she can now lead a normal life.  We are truly joyous that her life was saved. Her now healthy heart beats peacefully beneath the scar that tells of her journey with rheumatic heart disease.

Ryan: heart defect warrior aiming for the skies

Ryan receiving treatment in San Antonio, Dec 2015

For the first three years of his life, Ryan Mbuvi was strong and healthy. His growth and development milestones were normal. The only ailments he had on very few occasions of his young life were common cold and flu which were no cause for alarm. He showed no signs of an underlying critical illness.

When he started school at a local Montessori at the beginning of 2015, he was so excited to have long days of learning and play with his peers. As a first born, it was not his daily norm to have so many children around for play and school quickly became his new favorite place. Unfortunately, his excitement did not last so long. On the third week of school, Ryan’s mum received a call from his teacher. Ryan’s fever and pulse rate were both high.

He was rushed to hospital where days later, he was diagnosed with Ventricular Septal Defect (VSD). Hoping it was a misdiagnosis, his parents sought a second opinion which confirmed their worst fears. VSD is a defect in which there is a hole in the wall that separates the lower left and right chambers of the heart.

 “This diagnosis was the beginning of a draining and devastating journey in pursuit of Ryan’s treatment. The drugs were extremely expensive and could only be bought at a specific pharmacy. Ryan needed a heart surgery to correct the defect. At some point, the doctors gave up on him saying they lacked capacity to handle the surgery.” Ryan’s mum.

Ryan’s mum re connection with a long-time friend became the turning for this young family. It was this friend who introduced her to Care for A Child’s Heart (CFACH). CFACH, in partnership with Heart Gift International took up Ryan’s case and were able to fly him to San Antonio, USA, where he had a successful heart surgery in December 2015.

Ryan is now a 9-year-old grade 3 student, enjoying good health and no longer needs any post-surgery medicine. He still enjoys playing with his friends in school and his younger sister, Lindsey at home. Ryan looks forward to becoming a pilot and hopes to fly so frequently between Nairobi and San Antonio, in thanksgiving and community service for the life-saving surgery he had there!

Asha Adan: Discriminated for her heart defect

Asha Adan

When she was still a baby, Asha was diagnosed with cyanotic heart defect.  Her community believes this to be a curse and so she has to stay away from people. She cannot socialize with her age mates. She is surrounded by silence and loneliness, as her community deems fit. It is stigmatization so severe that at her age, Asha has never stepped into school. She cannot read or write, not even her name. Asha’s only friends are her siblings and elderly parents. Her mother is her confidant. Even when the rest of the world has stayed so far away from her, her mother has stood by her side.

Asha Adan, now 15 years old, was introduced to Care For A Child’s Heart (CFACH) by a teacher whose nephew the organization had assisted some years back.  Asha and her mother had to travel to CFACH’s family center in Nairobi. The good teacher mobilized a few friends and raised their fare.

At the CFACH family support center, Asha wanted to talk but she couldn’t because of language barrier. She only speaks Borana her native language in Mandera County, North Eastern Kenya. Her constant smiles and love for being near people tells of her friendly and jovial nature, but all of these she has to keep for herself. Although Asha’s condition is inoperable, she is not on any drugs but requires support to attend checkup clinics.

#Run with Solo: CFACH president running 2020 Kms to raise support for programs

CFACH President, Solomon Musyimi

Solomon Musyimi grew up in Nairobi before moving to the United States 20 years ago for further studies. He is grateful to have a healthy heart and this drives his passion to help children with heart defects get the medical help they need to lead normal lives. The Lenana School alumnus is the President of Care For A Child’s Heart (CFACH) a grassroots organization that helps children born with congenital heart defects and diseases from needy backgrounds.

Solomon’s efforts alongside those of his team members have over the years seen over 200 children undergo corrective heart surgeries and another more than 500 get vital medicines they need. CFACH, based in Nairobi’s South B, also hosts children and their caregivers from up country and across the boarders as they seek medical treatment in the city.

Solomon has been to Kenya on numerous medical mission trips; from visiting these children in their homes to accompanying them to hospital. Occasionally, some surgery cases have been referred to hospitals in the US. Solomon and his family have always hosted the children and their caregivers for the duration of their stay.

Having grown up in Kenya, Solomon has witnessed the suffering of people in the lower income levels without access to proper healthcare. The attorney, who is in private practice in Houston, Texas, believes it is the responsibility of every Kenyan, in the country or abroad, to participate in building a better future for Kenya. To end the suffering of needy children with heart disease, Solomon has an ambitious goal: he is running 2 020 Kilometers this year to raise 5 Million Kenya Shillings to help children in the CFACH program get the medical help they need. He has just reached the 800 Km mark of his ‘run with solo’ campaign.

Sahara is home after a successful surgery

Sahara is the 2^nd born in her family. She has a history of heart murmur and cyanosis (bluish color of the skin and mucus membranes). She was diagnosed with MAPCAS (arteries that develop to supply blood to the lungs when the native pulmonary circulation is underdeveloped); Patent Ductus Arteriosus (PDA), a hole that allows blood to skip circulation to the lungs and pulmonary atresia with intact septum.

When Sahara went for pre surgery assessment she was cleared and booked for surgery on Monday 6^th January 2020. The Hearts of East Africa Medical Mission team would be operating on her at Tenwek mission Hospital in Bomet, Kenya. On the night before her surgery, the doctors noticed she had a clot in her system. Surgery had to be suspended to manage the clot. One week later, the clot had cleared. She went through an open heart surgery successfully.

She was in the ICU for a few days before she was transferred to the HDU, later to the wards and now she is home! She has her smile back. Her mended little heart is now healing. No turning blue again- the cyanosis is gone! 

We have more children like Sahara that need heart surgery so as to live a normal life. Will you help them? See a few of them here https://changa.page.link/LeikM


We thank you for your donations to CFACH, that help us reach out to children like Sahara!


Thankfully,
CFACH
Heart Diaries
 

Introduce Yourself (Example Post)

This is an example post, originally published as part of Blogging University. Enroll in one of our ten programs, and start your blog right.

You’re going to publish a post today. Don’t worry about how your blog looks. Don’t worry if you haven’t given it a name yet, or you’re feeling overwhelmed. Just click the “New Post” button, and tell us why you’re here.

Why do this?

• Because it gives new readers context. What are you about? Why should they read your blog?
• Because it will help you focus you own ideas about your blog and what you’d like to do with it.

The post can be short or long, a personal intro to your life or a bloggy mission statement, a manifesto for the future or a simple outline of your the types of things you hope to publish.

To help you get started, here are a few questions:

• Why are you blogging publicly, rather than keeping a personal journal?
• What topics do you think you’ll write about?
• Who would you love to connect with via your blog?
• If you blog successfully throughout the next year, what would you hope to have accomplished?

You’re not locked into any of this; one of the wonderful things about blogs is how they constantly evolve as we learn, grow, and interact with one another — but it’s good to know where and why you started, and articulating your goals may just give you a few other post ideas.

Can’t think how to get started? Just write the first thing that pops into your head. Anne Lamott, author of a book on writing we love, says that you need to give yourself permission to write a “crappy first draft”. Anne makes a great point — just start writing, and worry about editing it later.

When you’re ready to publish, give your post three to five tags that describe your blog’s focus — writing, photography, fiction, parenting, food, cars, movies, sports, whatever. These tags will help others who care about your topics find you in the Reader. Make sure one of the tags is “zerotohero,” so other new bloggers can find you, too.

Introduce Yourself (Example Post)

This is an example post, originally published as part of Blogging University. Enroll in one of our ten programs, and start your blog right.

You’re going to publish a post today. Don’t worry about how your blog looks. Don’t worry if you haven’t given it a name yet, or you’re feeling overwhelmed. Just click the “New Post” button, and tell us why you’re here.

Why do this?

• Because it gives new readers context. What are you about? Why should they read your blog?
• Because it will help you focus you own ideas about your blog and what you’d like to do with it.

The post can be short or long, a personal intro to your life or a bloggy mission statement, a manifesto for the future or a simple outline of your the types of things you hope to publish.

To help you get started, here are a few questions:

• Why are you blogging publicly, rather than keeping a personal journal?
• What topics do you think you’ll write about?
• Who would you love to connect with via your blog?
• If you blog successfully throughout the next year, what would you hope to have accomplished?

You’re not locked into any of this; one of the wonderful things about blogs is how they constantly evolve as we learn, grow, and interact with one another — but it’s good to know where and why you started, and articulating your goals may just give you a few other post ideas.

Can’t think how to get started? Just write the first thing that pops into your head. Anne Lamott, author of a book on writing we love, says that you need to give yourself permission to write a “crappy first draft”. Anne makes a great point — just start writing, and worry about editing it later.

When you’re ready to publish, give your post three to five tags that describe your blog’s focus — writing, photography, fiction, parenting, food, cars, movies, sports, whatever. These tags will help others who care about your topics find you in the Reader. Make sure one of the tags is “zerotohero,” so other new bloggers can find you, too.

Introduce Yourself (Example Post)

This is an example post, originally published as part of Blogging University. Enroll in one of our ten programs, and start your blog right.

You’re going to publish a post today. Don’t worry about how your blog looks. Don’t worry if you haven’t given it a name yet, or you’re feeling overwhelmed. Just click the “New Post” button, and tell us why you’re here.

Why do this?

• Because it gives new readers context. What are you about? Why should they read your blog?
• Because it will help you focus you own ideas about your blog and what you’d like to do with it.

The post can be short or long, a personal intro to your life or a bloggy mission statement, a manifesto for the future or a simple outline of your the types of things you hope to publish.

To help you get started, here are a few questions:

• Why are you blogging publicly, rather than keeping a personal journal?
• What topics do you think you’ll write about?
• Who would you love to connect with via your blog?
• If you blog successfully throughout the next year, what would you hope to have accomplished?

You’re not locked into any of this; one of the wonderful things about blogs is how they constantly evolve as we learn, grow, and interact with one another — but it’s good to know where and why you started, and articulating your goals may just give you a few other post ideas.

Can’t think how to get started? Just write the first thing that pops into your head. Anne Lamott, author of a book on writing we love, says that you need to give yourself permission to write a “crappy first draft”. Anne makes a great point — just start writing, and worry about editing it later.

When you’re ready to publish, give your post three to five tags that describe your blog’s focus — writing, photography, fiction, parenting, food, cars, movies, sports, whatever. These tags will help others who care about your topics find you in the Reader. Make sure one of the tags is “zerotohero,” so other new bloggers can find you, too.