Parents
Melissa

Profession:
Founder of Raising Aidan, Entrepreneur
www.raisingaidan.co.za

Age of parents:
40

Child’s name:
Aidan

Age: 7 years

Is this your only child?
Yes!

Diagnosis of child:
Aidan has Costello Syndrome. It’s a very rare genetic disorder. He is only the 2nd diagnosis in RSA, with 200 to 300 cases world wide. He is at high risk of developing cancer so I scan his tummy every 3 months for abdominal tumours. He has a thickened left ventricle wall in his heart, has very tight tendons throughout his body which caused him to be born with Culcaneo Vulgus feet which were corrected surgically last year. He has undergone numerous surgeries already, the last was for a tethered cord on his spine in July 2016.

What are the biggest challenges facing your child on a daily basis?
Huge medical costs are a massive challenge, which is why I started the Raising Aidan Microwave Mix business. I could probably pay for 5 X C-Class Mercedes each month with the amount spent on medical bills - lol!


When Aidan was born he had MAJOR feeding difficulties and by all rights SHOULD have been given a feeding tube directly into his stomach. Up until recently he would vomit a few times a day. He failed to thrive and eventually started gaining weight around 11 months when he started drinking pureed solids from his bottle which he STILL drinks morning and night. 

It has now swung the opposite direction (typical of the syndrome) where Aidan is ALWAYS hungry. Costello kids have a roaring metabolism, and he now eats enough to feed a growing teenage boy.

This proves to be challenging when it comes to pain management after surgery. He metabolises faster than normal, and it’s a fine balance between overloading his liver and kidneys and keeping him pain free. 

He also has Sensory Processing Disorder which means we have to stick to quite a strict sensory diet of limited electronics, calm time and sensory soothing things like massage, swinging, and he loves his bath. He has lots of food allergies including nuts, eggs, soya and gluten, and he has physical challenges due to his tight tendons, so he can’t walk long distances without needing to be picked up.

What are the happiest moments you have with your child on a daily basis?
We have snuggle time every morning and every night while he drinks his bottle. He will probably wean himself off it in the next year or so. We are a tight team.

Are you married? I’m a single mom. His dad and I separated when Aidan was age 2.

Has your special needs child had an effect on your marriage?
I never married Aidan’s dad, his dad had difficulty dealing with Aidan’s diagnosis (we both did).

Are your family and friends supportive?
I have a phenomenal group of friends that have given me the space to be me, and to discover my true self. They’ve given me the space to grieve without shame or embarrassment or judgement and without them I wouldn’t be where I am today.

Family were less supportive.They started out willing, but they lacked the understanding of what it takes out of you as a parent to raise a special needs child, and the emotions you go through after diagnosis. When I needed understanding and support in the early days, I was often faced with judgement because I was tired (in their eyes ‘lazy’). They didn’t see the constant restlessness at night that had me up sometimes 10 times a night for literally the first 3 years of his life. I was angry too (which they never understood)… going through the normal stages of grief. It’s much better now, but they aren’t close enough to offer support.

What has your child taught you about yourself, both positively and negatively?
Aidan has been the biggest gift of my life and has awakened me to the deeper and higher realms of why I am here. He has taught me patience, compassion, grief, joy, love… all the things that make living worthwhile.

Do you take time out, if so what do you do to relax?
I do now. I will at least once a week have a lunch with friends where it’s just grown up talk. I have my nails done with my best friend once every few weeks, and I enjoy a glass of wine every so often. At this stage I very seldom go out in the evenings due to not having someone to babysit for me… but I am working on it ;)

What has made the biggest difference to your child's quality of life?
My emotional healing has made the most difference to Aidan’s life. Children are like energy sponges, and they feel EVERYTHING you are going through. So much so, that you don’t even have to tell them something is wrong. They instinctively know. When I made the decision to go THROUGH my grief and feel all the emotions instead of suppressing everything, e lot of ugly came out during that time. 

I processed anger, depression and denial… I delved deep within and found a lot of my triggers which thankfully, I managed to process. I’m a much calmer and happier version of myself now, and Aidan has benefited greatly from having a calmer happier mommy that can now takes everything in her stride as opposed to reacting to everything.

What is your dream for your child?
At this stage, I don’t know what his intellectual capabilities are. He is VERRRY bright, but at the same time, very delayed in learning. He still doesn’t read or write but I’ve also learnt not to compare him to other kids. He eventually gets it all done. Just in Aidan time. 

My dream for him is to be totally self-sufficient by the time he reaches adulthood. Enough so that he can run his own business (he would NOT do well being an employee being told what to do – he gets that from his mom lol), and be able to PAY someone to complete the tasks he physically can’t do himself. I think we all worry about how our kids will cope if something happens to us, so my goal is to slowly but surely help him become totally independent.