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Fundraising for Novah de Wet – Spinal Muscular Atrophy (SMA Type 1)

Nova de Wet

Novah`s story:

“Novah de Wet is a baby girl from Aggeneys in the Northern Cape who was diagnosed with Spinal Muscular Atrophy (SMA Type 1) and this gives her a life expectancy of 1-2 years if she doesn’t get gene therapy which is only available in the USA.

SMA Type 1 is a rare genetic disease that destroys important motor neurons for movement and muscle development and is responsible for most infant fatalities.

There is a miracle drug in the US called Zolgensma, and it costs approximately R35 Million. We need to raise the funds as soon as possible before irreversible damage is done so we are in a race against time to save her life!

She is the cutest baby ever and she has an older sister who is 8 years old, Hayleigh, who just wants to play with her but Novah can`t due to her limited movements.

My medical aid and government has failed us so we are alone in this race against time to save my baby girl. I know we as a country can come together to save my baby’s life.”

Please open your heart and support our fundraiser for this precious little baby – all proceeds from the “Hope for Novah” bracelets are donated towards her ongoing medical care and expenses. Together we CAN make a difference and help a child in need!

Alternatively, please consider making a donation. Any and all donations welcome. REF: Novah de Wet.

Join the Baby Novah Facebook Group for live updates on her journey.

Fundraising for Novah de Wet

Hope for Novah Bracelets

The “Hope for Novah Bracelets” for consist of beige and maroon wooden beads with silver and diamante fillers.

Charm options:
Faith / Hope-Awareness Ribbon / Angel.

Colour options:
1. Maroon and Beige mix.
2. Maroon with 2 Beige beads.
3. Beige with 6 Maroon beads.

To place an order, contact the agent in your area or shop online.

Hope for Novah Bracelets

Shop Online

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August is SMA Awareness Month

Spinal muscular atrophy (SMA) is a rare genetic disease that makes the muscles weaker and causes problems with movement. Individuals with SMA have difficulty performing basic functions of life, like breathing and swallowing. They also have difficulty sitting up straight, crawling and walking. Other symptoms include weak arms and legs, muscle tremors, and joint and bone problems. This condition gets worse over time, but there are treatments available to help manage the symptoms. It is important to note that SMA does not affect a person’s ability to think, to learn, or to build relationships.

“SMA is caused by a mutation in the survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein that is critical to the function of the nerves that control our muscles. Individuals with SMA don’t produce survival motor neuron (SMN) protein at high enough levels. Without this protein, those nerve cells cannot properly function and eventually die, leading to debilitating and sometimes fatal muscle weakness.” – curesma.org

Four primary types of SMA, based on the age of onset:

SMA Type 1 (Infantile-onset SMA or Werdnig-Hoffman Disease):
This is the most severe kind of SMA and strikes infants within the first 6 months of life. Some children with SMA type 1 will die before their second birthday, but aggressive therapy is improving the outlook for these children.

SMA Type 2 (Intermediate SMA):
When a child develops spinal muscular atrophy between six and 18 months, the condition is classified as type 2. The child may be able to sit up, but respiratory challenges can shorten their lives as the disease progresses.

SMA Type 3 (Juvenile SMA, Kugelberg Welander Syndrome):
Type 3 SMA emerges in children 18 months old or older and can become evident as late as in the teenage years. Muscle weakness is present, but most patients can walk and stand for limited periods, particularly early in the course of the illness.

SMA Type 4 (Adult SMA):
In some people, SMA develops in adulthood. Type 4 SMA is rarely severe enough to have impact on the patient’s lifespan.

SMA not linked to chromosome 5:
Some forms of SMA are not due to SMN1 gene mutations and SMN protein deficiency. These forms, including Kennedy’s disease, vary in severity, and some may involve muscles farther away from the center of the body than those associated with SMA types 1 through 4.

hopkinsmedicine.org

There is currently no cure for SMA and no medications for treatment. Symptoms are managed to improve quality of life which may include the use of a wheelchair, braces, and other support devices; assistance with ventilation; physical- and occupational therapy as well as rehabilitation.

For a more information about SMA, diagnosis, treatments please visit the following article sources:
www.nhs.uk, hopkinsmedicine.org, curesma.org, signsofsma.com.


August is SMA Awareness Month!

Wearing an Awareness Bracelet creates an opportunity to start a conversation and share information about a particular cause or disease. One conversation can have ripple effects and may ultimately improve early diagnosis, access to services, increase funding for research, and help reduce feelings of isolation as well as discrimination that so many individuals with rare diseases and special needs face on a daily basis.

Shop SMA Awareness Bracelets Online

SMA Awareness Bracelets © Arms of Mercy NPC
SMA Awareness Bracelets

Kerry Walsh
Kerry Walsh

Raising SMA Awareness with Kerry Walsh

My name is Kerry Walsh, I was born on the 22nd of October 1997 in a set of fraternal twins. Around the age of one, my parents had realized that I wasn’t developing like my sister was. I was taken to the doctor where I was diagnosed with low muscle tone. We tried months of physical therapy but unfortunately, there was no improvement. I was then sent for a muscle biopsy in my neck. They discovered that I had SMA (Spinal Muscular Atrophy). I was given the life expectancy of 5 years old. My parents were told to take me home and enjoy the time we had… Continue reading.


*All information in this post is published for general information and educational purposes only. Arms of Mercy NPC and the armsofmercy.org.za website do not offer any diagnosis or treatment, and will not be held liable for any adverse health effects, losses and/or damages whatsoever. Any action you take as a result of the information is at your own risk, and does not replace the advice of a qualified medical practitioner. Always consult with your medical healthcare practitioner.

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Rest in Peace Divan Prince

Rest in Peace Divan Prince

It was with such sadness and a heavy heart that I need to inform you that Divan ran into the arms of Jesus last night. His battle with Spinal Muscular Atrophy Type 1 (SMA) is over and he is at peace now, free from pain.

To Divan`s family: Please accept our deepest sympathies for the loss of your baby boy. We pray that the light of God’s love shines upon you as you face the darkness of your pain and your grief. Know that God will never forsake you. He will always look after you because you are His child and He is your Father. May you be blessed with the peace and comfort that you seek during this difficult time.

May God give you all the Grace to accept what has happened and the serenity to carry on living.

Karin Harmse & AOM Team.

Divan`s “Prince of Hope” bracelets will be available until the 15th of July 2022. Wear yours in memory of a brave little boy who fought until the bitter end, and who was loved by so many. Order from our agents or shop online.

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Fundraising for Amanda Povall – Spinal Atrophy & Spinal Paraplegia

Amanda Povall

Amanda`s story:

Amanda Povall (42yr) has Spinal Atrophy and Spinal Paraplegia. She has no function in her lower limbs and is experiencing a gradual loss of function in her upper limbs and hands. She has been wheelchair bound for 10 years, and about 3 years ago, her upper limbs started to show signs of degradation. Her bladder control has stopped and she is required to use adult diapers, she also has neuropathic pain in her feet.

There is only one salary income in the household with 3 children. Amanda is not on a medical aid and all medical expenses are carried by her husband. She does receive a SASSA grant of R1890.00 per month.

Her Physiotherapy and Occupational Therapy is done by the local state hospital. The hospital is not able to supply all the medical supplies meaning the cost is covered by her husband. There is not always enough funds left after other expenses are paid, which results in either no medicine, or a reduced amount of medicine is purchased. This then aggravates her symptoms.

Any form of assistance will be greatly received and any financial assistance is paid directly into the Pharmacy’s account. She requires the following medical Supplies:
1. At least 5 to 6 packets adult diapers (14 to a packet) per month costing between R950.00 – R1140.00 per month.
2. Baclofen x 5mg twice a day, 60 a month costing between R2000.00 – R2500.00 per month.
3. Lyrica x 25mg twice a day, 60 a month costing between R800.00 – R900.00 per month.
4. Rivotril x 0.25mg once a day, 30 a month costing between R850.00 – R950.00 per month.
5. Tegretol syrup x 150ml per month costing R350.00 – R400.00 per month.
6. Tripoline 25mg once a day, 30 per month costing R50.00 – R60.00 per month.

By supporting our fundraising efforts you can be directly involved in making a positive difference in Amanda`s life. All proceeds from the “Power of Love” bracelets are donated towards her ongoing medical care and expenses. Together we CAN change the world!

Alternatively, please consider a donation; any and all donations welcome. REF: Amanda Povall.

Fundraising for Amanda Povall

Power of Love Bracelets © Arms of Mercy NPC

Power of Love Bracelets

The Power of Love” bracelets for Amanda consist of beige, coffee, and mint wooden beads with silver and diamante fillers.

Charm Options: Bird / Anchor / Awareness Ribbon.

To place an order, contact the agent in your area or shop online.

Power of Love Bracelets © Arms of Mercy NPC

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Rest in Peace Thalia Hendricks

Rest in Peace Thalia Hendricks

It was with such sadness that I received the news that Thalia ran into the arms of Jesus last night. She is at peace now and free from pain.

To Thalia’s parents and Family:
Please accept our deepest sympathies for the loss of your baby girl. We pray that the light of God’s love shines upon you as you face the darkness of your pain and your grief. Know that God will never forsake you. He will always look after you because you are His child and He is your Father. May you be blessed with the peace and comfort that you seek during this difficult time.

Karin Harmse & AOM Team

Rest in peace, sweet angel Thalia

Orders for the SMA Warrior Bracelets will close on the 30th of November 2021. Shop online.

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Raising SMA Awareness with Kerry Walsh

Kerry Walsh

“Life is a beautiful gift and it’s our responsibility to live it to the full, that is what I plan on doing!” – Kerry Walsh


“My name is Kerry Walsh, I was born on the 22nd of October 1997 in a set of fraternal twins. Around the age of one, my parents had realized that I wasn’t developing like my sister was. I was taken to the doctor where I was diagnosed with low muscle tone. We tried months of physical therapy but unfortunately, there was no improvement. I was then sent for a muscle biopsy in my neck. They discovered that I had SMA (Spinal Muscular Atrophy). I was given the life expectancy of 5 years old. My parents were told to take me home and enjoy the time we had.

That plan didn’t work for us because we were not just going to give up! I am turning 21 this year and I’m not planning on slowing down anytime soon. As a family, we take every day as it comes and always hope for the best.

As a child, I coped quite well in school. My parents sent me to a mainstream public school (Bryandale Primary school). I have a very low immune system, therefore, I was often ill with pneumonia. This led to me missing a lot of school days, but I always managed to catch up.

At the end of grade 6 we decided to start looking at possible high school options. Didn’t seem like it was going to be a complicated process, but nothing is as it seems, and it was going to be one of my life’s defining moments. We tried a lot of the public and private school in our area and every one of them said “no.”

We were left with two options that were not close to home or in our budget. I ended up going to a private school [Summit College] which was extremely accessible and accommodating. I managed well in high school. These events of needing to go to a school out of our budget led to the start of The Kerry Walsh Trust, which we used to host fundraisers to raise the money needed for my medical and educational requirements. Over the years we have had many successful fundraisers like the 94.7 ride for a purpose, Barnyard fundraisers, and charity golf days. The fundraisers now are aimed at also being able to give back.

At the end of matric I wasn’t sure what I wanted to do with my life, I decided to take a gap year and figure out my place in this world. During this time I had a “never say no” attitude. I was going to try everything that I could – and so I started my motivational speaking campaign @KmotivationSA.

I started with motivational speaking in high schools to encourage students to live life to the fullest, take advantage of their opportunities and to love all kinds of people, because everyone has a story, some are just a little more noticeable. I grew so much threw doing these speaking engagements and gained a lot of exciting opportunities from getting my name and story out there. I started a Twitter rating system so that people with disabilities knew the places to go that was the most accessible. I am extremely passionate about changing the level of accessibility in South Africa, because everyone deserves to go out without the fear of the premises not being accessible.”

Kerry was an ambassador for the Nappy Run 2016-2017, and was nominated as a Margaret Hirsch Women in Business 2017-2018.

Support Kerry in her mission to raise awareness about Spinal Muscular Atrophy (SMA)

Raising SMA Awareness with Kerry Walsh - Arms of Mercy NPC

SMA Awareness Bracelets

SMA Awareness Bracelets consist of silver, coral and mint green wooden beads with crystal, silver and diamante fillers.

Charm options: Hope / Tree of Life / Awareness Ribbon.

To place and order, contact the agent in your area or shop online.

Alternatively, please consider a donation; any and all donations welcome. REF: Kerry Walsh.

SMA Awareness Bracelets © Arms of Mercy NPC
SMA Awareness Bracelets

Shop Online