Help baby Chad born with a rare genetic syndrome
Fundraising campaign by
Tracey Classens
-
US$8,580.00Donated So Far
Campaign Story
Last year my husband and I found out we were pregnant, we were ecstatic and started preparing for our new little bundle. At our 12 week scan a high NT was picked up and we were told our baby would possibly have Down syndrome so we opted for a CVS genetic test to confirm or rule this out, one of the hardest weeks ever was waiting for the news. At the end of the week we were informed all is clear and we were over the moon. At our 21 week anatomy scan the specialist picked up possible hand issues and we were told he may have structural issues here but that we would only know the exact issue once he was born.
On 22 January 2018, at 37 weeks I had an emergency C-section and Chad was born. It was soon realised he had a very rare condition involving craniosynostosis called “Apert Syndrome” and he was rushed to the NICU. His fingers and toes are fused, as well as an early skull fusion, small nasal passages, wider set eyes, and a shallow eye socket, two holes in the heart and this left us devastated. We have no family history on either side to suggest this as a possibility and soon were informed it is a spontaneous genetic error that can just occur- the news was nothing less of traumatic.
Chad spent 40 days in the NICU with feeding tubes and oxygen; eventually he was allowed to come home and showed such strength getting over each hurdle. We now face the overwhelming task of offering our son the best chance to have a normal life. He will need leg casts and special shoes to straighten his feet, and face multiple surgeries to correct his skull and hands over the first 2 years of life. He will then need intense therapy to assist with his recovery over the years from occupational therapy to speech therapy. Chad also has placement eye issues due to the skull fusions and will need constant ophthalmology assessments to assist with this.
The best news so far is the two holes in the heart have almost completely closed on their own and only monitoring is needed currently with no further intervention needed at this stage. Our little miracle boy is reaching milestones so far, and the big smiles just melt your heart, as parents we know we have to give him all we can and deal with the immense heartache it brings with it.
I feel so extremely blessed with our family and friends support thus far and we are not ones to ask for assistance, but have come to realise this is a task greater than what we can handle alone. The medical bills have already started to overwhelm us even with medical aid and gap cover, that will only go so far. Any prayers and donations which can be spared will help baby Chad immensely with the long road he is facing ahead and would be such an enormous help for us.
Donors
- Darryl Classens
- Donated on Mar 30, 2019
Another small donation for my Grandson Chad to give him the best chance in life lots luv Oupa Darryl xx
- Anonymous
- Donated on Mar 05, 2019
How far we have come
Update posted by Tracey Classens at 12:34 pmIf you had to ask us a year ago if we were coping I would have battled to answer. In just over a year we have survived a long NICU stay, orthopaedic surgeon visits and leg casts, weekly physical therapy sessions, grommets and numerous ENT check-ups, dental visits,monthly ophthalmology visits. . . . .
We have a surgery date! (and hair)
Update posted by Tracey Classens at 07:53 amA busy last few weeks for baby Chad but just wanted to update how amazingly well this little baby is doing! We have been, and are, so blessed to have such wonderful people in our lives and to have the donations and prayers that have got us all this far,. . . . .
How time flies!
Update posted by Tracey Classens at 12:36 pmIt has been a long overdue, much needed, update from our side. So much has happened the last few months with our baby Chad who is now 6 months old. Thankfully the leg casts came off, a very difficult three weeks with them on, but he now has straighter feet. . . . .
We have leg casts!
Update posted by Tracey Classens at 04:08 pmWe have been so overwhelmed with such amazing support for Chad! So very blessed to have his story shared far and wide, and receive so much love, support, prayers and donations allowing us to push on forward. So thank you to everyone, words cannot describe!!Last week we had the dreaded. . . . .
Donors & Comments
- Darryl Classens
- Donated on Mar 30, 2019
For Chad Luv Oupa Darryl xxx
- Darryl Classens
- Donated on Mar 30, 2019
Another small donation for my Grandson Chad to give him the best chance in life lots luv Oupa Darryl xx
- Anonymous
- Donated on Mar 05, 2019
- Darryl Classens
- Donated on Mar 04, 2019
As promised a further donation to help Chad on his way to a norman life Lotsa Love Oupa Darryl xxxx
- Darryl Classens
- Donated on Mar 04, 2019
As promised a further donation to help Chad on his way to a norman life Lotsa Love Oupa Darryl xxxx
- Wim & Lis Kloek
- Donated on Jan 22, 2019
Happy 1st Birthday! a Special day indeed!
- Neville Kloek
- Donated on Jan 22, 2019
Happy 1st Birthday Chad. Hope you had an awesome day little samurai
- Darryl Classens
- Donated on Jan 02, 2019
Hi Guys as promised another small donation to help Chad so happy that Chad is well on his wqy to recovery from his operation and will see you guys this week Luv Oupa Darryl xxx
- Darryl Classens
- Donated on Dec 01, 2018
As promised a further donation for Chad and the long road ahead. I will be thinking of you all on Monday the 3rd December when Chad has his first operation Love to all Oupa Darryl xxxxx
- Megan Jones
- Donated on Nov 13, 2018
For Chad Luv Oupa Darryl xxx