Villiers need the help of a larger audience

When our baby was born - we suddenly was confronted with the odds of a premature baby - just without the possibility of him ever to really flourish unless all his defective genes are by miracle correctly reprogrammed. But we did not know that then. Day by day, month by month we struggled to nourish him, to keep him from getting sick, losing this and the next battle. Not even hospitals was able to get milk into his tiny body. But we did. And he grew. Slowly. We tried every precaution to prevent him from going to the hospital yet again. And again. And again. Till he was 17 months old. There after we could keep him at home during sick spells. Then we learned why all of the trepidation: a professor at Stellenbosh University diagnosed him with a genetic disorder. receiving a diagnosis of CdLS can be overwhelming. All of the hope we had for him was dashed. We now knew he had to have more help - help for the rest of his life - more than what we can give him on our own. For us  lifelong process of challenging and re-challenging feelings, thoughts, actions began. We realize we cannot do it on our own.

09 update: At 3 yo he started to crawl slowly, in  April, during a heavy dose of antibiotics. We presume that he felt much stronger. He must have been feeling bad for very long. He kept getting ear infections. In May he got grommets. But the ear infections kept reoccurring. But at least we could medicate him locally.  Eventually we realized it must be his milk getting into his ear canals. He swallows without completely closing his nose cavity. We started to mix it with food like carrots & sweet potato. It worked to some extent. Eventually a dietician gave us the name of an expensive but complete food supplement to replace the milk, and suddenly it worked. He was on antibiotics for most part of the winter. By mid year our medical fund was depleted. We were under severe pressure. But now things changed we hope. Except for hospitalization in October because of a virus that compromised his breathing, he is getting stronger now.

At the age of four he stood up once - by himself. But just after this, at his second sisters birth, his right leg broke just above the knee. Up till Dec 2013 we are still struggling to get him to stand up. He is 6.5 years old now. His last set of grommets lasted 2 years and it was replaced in October.

We feed him via a peg [since 4yo], as his larinks and  valve between nose and throat do not close properly yet. If he drinks, it gets into his ear channels an the results are very bad and painful.

We had a lot of problems with his bowel movements. He has to be stimulated almost always to have any. Also it fermented to be very sour. Until recently. We changed to a food that DO NOT CONTAIN SOY - a Nestle product. And now that sour problem is solved. This is a mayor step forward. Buit not the bowel movements. We have to use suppositories to stimulate it. Every third day. But this is extremely taxing on him. It leaves him sick for 24 hours each time .

Aug 2015 He is eight by now. We now use gloves to remove his stool by hand every second night. No more extended trauma. It takes 2-3 minutes only. At first he cried. But over time he understood and now he only pulls a face. It is clear now that his bowels moves everything to before the anus. That is where things stop. We feed him on a porridge too. He sips it through a bottle. He still crawls and he understands much more about life.

July 2018 The last 2 1/2 years was especially harrowing after we tried to put him in a home for children like him during the day so that we could generate a better income, an he could get specialised care. Disaster struck within the first week in October 2015. At least 2 times we know of, they had him fall on his head on a tile floor from a nappy exchange table at a height of 1.4m. He developed epilepsy and lost his ability to crawl. He also became very susceptible to lung infections. He lands in hospital within hours after the first symptoms.

He is fed through a peg and is under a strict medical routine. Although he is given physiotherapy twice a day, he needs more specialized therapy, as well as some expensive equipment. We now have a personal caretaker to stay with him always in the day, as he is severely handicapped.

Villiers is an adorable little boy. Very fragile. But so lovable.  Every day more so. We are going to do our utmost for him, but no family can care for such a child alone. We hope you can see your way open to help us help him.