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LWANELE OUR LITTLE WARRIOR

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My name is Chelesani and I am Lwanele's mom. He is a 3-year-old, happy boy who was born with multiple birth defects. Due to his several birth defects, Lwanele is developmentally delayed and we need your help in raising funds for his therapy. No amount is too small. If you cannot donate to this cause at this stage, you can still help by spreading the word!

Lwanele was born with multiple birth defects which have led to severe developmental delays, sensory processing disorders, mild cerebral palsy, myopia bronchiectasis and chronic lung disease.  

He was born prematurely on the 1st of June 2017 at 32 weeks via an emergency C-section weighing only 1.6kg.

Lwanele is diagnosed with the following conditions 

  • Ventriculomegaly/hydrocephalus. This is a condition in which the Cerebrospinal Fluid (CSF) fills up the brain ventricles and the structures within the brain become larger than normal. As a result, the large ventricles can inhibit the proper development of the brain. This was the only condition that was diagnosed while Lwanele was in utero. After birth further conditions were discovered.
  • Oesophageal Atresia (OA) and Tracheoesophageal Fistula (TOF). This is a communication between the trachea and oesophagus and whereby the oesophagus is disconnected from the stomach. For this he had to be operated on when he was just over 24 hours old.
  • Imperforate anus (IA). This is whereby the baby is born without an opening to the anus. He had to have a colostomy created for him when he was 6 days old, which he is still using.
  • Encephalocele. This is a neural tube defect characterized by sac-like protrusions of the brain and the membranes that cover it through openings in the skull. This defect is caused by failure of the neural tube to close completely during foetal development.
  • Laryngomalacia. This is a congenital softening of the tissues of the larynx (voice box) above the vocal cords. This is the most common cause of noisy breathing in infancy. The laryngeal structure is malformed and floppy, causing the tissues to fall over the airway opening and partially block it.
  • Tracheomalacia – This is the collapse of the airway when breathing. This means that when the child exhales, the trachea narrows or collapses so much that it may feel hard to breathe. This may lead to a vibrating noise or cough. Tracheomalacia can result in recurring respiratory illnesses or make it difficult to recover from a respiratory illness. In the long term, it can lead to progressive lung injury.

Because of the combination of Lwanele's abnormalities the Pediatrician ordered for genetic testing to be done. The results came back as "normal" and the only other diagnosis remaining was that of VACTERL-Association which is an acronym used to describe a series of characteristics which have been found to occur together with no known pathogenetic cause to explain the grouped incidence. After a 3 months going in and out hospital and almost losing Lwanele, we later on took Lwanele to a Pediatric Pulmonologist who informed us that Lwanele’s breathing struggles were due to aspiration of food and vomit. All the mouth feeds had to be stopped and Lwanele depended on Total Parenteral Nutrition (TPN) and drips for nourishment. After he stabilized, he was moved to another hospital, where a swallow study was done which revealed unsafe swallowing and food getting stuck. It also confirmed that he has a severe Gastroesophageal Reflux Disease (GERD). 

After the swallow study, a team of doctors sat down and discussed the way forward and they all agreed that the only way to protect his lungs was for him to get a Nissen fundoplication and a Percutaneous Endoscopic Gastrostomy (PEG) for feeding. 

Lwanele had his longest time in hospital as he stayed in the PICU for over 4 months, finally going home on home oxygen and with a home nurse.

As mentioned above, Lwanele is developmentally delayed and struggles a lot with sensory processing disorders, we are looking for assistance to help him achieve his utmost best. 

 

THERAPIES AND MISCELLANEOUS NEEDS:

  1. Speech therapy which he gets once a week, courtesy of The Marian Rose Foundation.
  2. Chest physio which he gets as and when needed to try and clear the secretions which easily get stuck in his airways due to tracheomalacia and bronchiectasis. 
  3. Neurophysiotherapy which we still need funding for. 
  4. Occupational Therapy to especially address his sensory disorders. 
  5. Every two months Lwanele needs to be seen by his pediatrician.
  6. Every 6 months he has to be seen by his neurologist.
  7. Every 4 months he must be seen by his Ophthalmogist.
  8. We need financial help to buy his plasters for the oxygen cannula and to secure his colostomy bag. 9. We need help in paying for his ad hoc medications and co-payments for his chronic medication.

** All of Lwanele’s therapists have to come home for the therapies and they charge a little extra for that as we do not drive and it is also safe to keep him at home. He is severely prone to infections.

 

Lwanele’s condition right now:

  • Lwanele is not eating anything at all by mouth
  • He has a colostomy bag
  • He has a PEG
  • He is still crawling and walks only with support
  • Not talking yet but loves singing gospel music and nursery rhymes 
  • He bangs his head a lot due to the sensory disorders 
  • Wears glasses
  • Generally, a happy boy

Read more on Good Things Guy

Donations

  • Sep 11, 2020 - R 105.75
  • "Keep going happy boy! " - Tracy

  • Sep 11, 2020 - USD $ 30.00
  • "Wish all the best, God bless you" - Andiswa and Jack

  • Sep 11, 2020 - R 100.00
  • "Your family is in my prayers " - Moya

  • Sep 11, 2020 - USD $ 29.83
  • "We love you Lwane" - Octa & Musa

  • Sep 08, 2020 - R 100.00
  • "Blessings to you Lwanele. Love, Light, Peace and Happiness. From 9 year old Romario" - ROMARIO VALENTINE

  • Sep 08, 2020 - USD $ 36.42
  • "Praying for Him. The greatest physician will heal him in Jesus Name.Stay strong dear" - Annah

  • Sep 07, 2020 - R 500.00
  • "We thank God for this precious life" - TALENT MOYO

  • Sep 05, 2020 - R 200.00
  • "Stay strong mummy. Very touching story. " - Haseena

  • Sep 05, 2020 - R 105.75
  • "Praying for you.God is able" - Nomvelo

  • Jul 29, 2019 - R 100.00
  • "Supporting this little boy means so much to me. I've been touched by what he's been through together with his family." - Anonymous

  • Jul 25, 2019 - USD $ 36.06
  • "X" - Aqeelah

  • Jun 19, 2019 - R 510.00
  • "May the good Lord strengthen you and and baby" - Simisosenkosi Machi

  • Jun 05, 2019 - R 203.00
  • "Stay Strong mommy God has taken Lwanele this far. " - Masi

  • Jun 05, 2019 - R 500.00
  • "God bless" - Carmen

  • May 10, 2019 - R 514.10
  • "God bless this little angel" - Zinj

  • May 10, 2019 - R 507.50
  • "Keep fighting little warrior! " - Nicky

  • May 10, 2019 - USD $ 139.43
  • "Wish you all the best and many dear mzukulu " - Tam Tshabangu

  • May 10, 2019 - R 514.10
  • "X" - Emma

  • May 07, 2019 - R 800.00
  • "May God send healing upon the little boy and provide strength and courage to the family - Sahana " - Anonymous

  • May 03, 2019 - R 100.00
  • "This has been a touching story to me as a mother...My prayer is seeing this young man over come this and May the Lord God our Great physician touch his life and make him whole. Amen" - Sithokozile Sibanda

  • May 03, 2019 - R 500.00
  • "With the grace of God, the boy will conquer. " - Kitso

  • May 03, 2019 - USD $ 13.04
  • "All the best " - J

  • May 02, 2019 - USD $ 13.83
  • "All the best my baby.." - Nceba

  • May 02, 2019 - R 51.41
  • "Supporting this little boy means so much to me. I've been touched by what he's been through together with his family." - Anonymous

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Statistics

Donations to date

R 9 841.17

Fundraising target

R 30 000.00
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Lwanele Sibanda Medical Cause

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My name is Chelesani and I am Lwanele's mom. He is a 3-year-old, happy boy who was born with multiple birth defects. Due to his several birth defects, Lwanele is developmentally delayed and we need your help in raising funds for his therapy. No amount is too small. If you cannot donate to this cause at this stage, you can still help by spreading the word:

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