Big Brave Marno
- By: Nerissa Roberts
- Short URL: https://www.backabuddy.co.za/money-for-marno
Our beautiful babies Marno Ludwig and Minka Nel were born on 3 February 2017 at 36 weeks. They were both admitted to the NICU where little Minka grew strong quickly and we welcomed her home after 2 weeks. Little Marno’s short life has been a bit more complicated. He is still in hospital. We miss him and pray for him to recover completely so that he can come home to his parents and twin sister. He has never even seen his beautiful room, he hasn’t met his four-legged siblings, and most of all – he is missing out and family life. His little crib in the twins’ room is empty.
Marno’s diagnosis is as follows:
- Tracheomalacia – The cartilage in his trachea is still a bit thin and collapses when he breathes. He has therefore received a tracheostomy in April 2017 which bypasses the upper airway and allows him to breathe either through a valve or a ventilator until the cartilage has strengthened more. The current aim is to wean him off the ventilator so that he breathes only through the valve on the trachie and no longer needs the ventilator. Once he is totally off the ventilator and stable, he might be able to come home.
- Grey Matter Heterotopia – this is interruption of normal neuronal migration in the brain from near the ventricle to the cortex, thus resulting in "normal neurons in abnormal locations”. The total effect of this on Marno can only be determined as he develops. For now, we do know that he is experiencing seizures because of this which are being treated with anti-seizure medication. Further effects, if any, will only be known as he grows and develops.
- He has moderate to severe asymmetrical sensorineural hearing loss in both his ears. Unfortunately no operation can ever fix this, however the wonderful ladies at Sandton Hearing and Balance Centre have made him hearing aids which means Marno can now hear perfectly!
In Marno’s short life he has suffered so much already. He has had to go through numerous operations, he has beaten the RSV Virus twice, and he has had pneumonia twice too.
Marno is lucky enough to have the best doctors at his side, the most wonderful nurses looking after him, and fantastic Physiotherapists, Speech Therapist and Occupational Therapists who work with him daily.
He is our warrior and a very strong boy. He has taught us so much about perseverance, patience and grace in these last 8 months, we are so blessed to be called his parents.
The support we have received from so many people that care has been inspiring and only by God’s grace. We could not have made it this far without any of you.
The journey ahead is long and uncertain still. Once Marno is home – reunited with Minka and their parents – he would need specialized medical equipment as well as a home nurse.
Without your continuous support, we would be lost.
If you would like any more information or contact me directly, you are more than welcome to.
Donations can be made directly into Marno’s Bank Account. Banking details are:
Account name: Mr. Marno Nel
Account Type: Savings
Account No: 74722232895
Branch Code: 250655