Good Morning Angels (Baby Sadie Penn)

Request from:

Jenny Schmidt 

 

Request for:

Baby Mark Schmidt from Mokopane

 

Angel 1:

Russell and Cita Penn on behalf of Sadie 

 

Sponsoring:

To honor Sadie on what would have been her 4th birthday, Russell and Cita will donate R30 000,00 towards Mark's heart operation

 

Angel 2:

The Good Morning Angels Fund

 

Sponsoring:

The GMA Fund will match's the Penn's generosity and contribute another R30 000,00 towards Mark's heart operation. 

 

Background: 

A parent only wants the best for their child - even more so when their child has special needs. This is the case with the Penn's and their daughter Sadie. She was born with a  unilateral cleft lip, but as her mother Cita writes - with today’s amazing surgery, it was fixed beautifully. She also had one of her eyelids partially still joined, which had to be cut open. These were all symptoms of Ectodermal Dysplasia, which was only diagnosed when she was one and also affected her body's ability to control temperature and some other physical features. Last November she   suffered with an extreme viral infection, with fevers in the region of 40 degrees for 3 solid days and in mid-December, she was diagnosed with dilated cardiomyopathy or weak heart muscles. She received special meds, but by mid June this year, little Sadie was admitted to hospital and transferred to Sunninghill Heart Hospital. Despite the best medical care money could buy, little Sadie passed away on 10 July 2014. Today, Sadie would have celebrated her 4th birthday - and to honour their valiant little fighter, Cita and Russell Penn wants to help another child in need of a healed heart . They've chosen little Mark from Mokopane - who needs an operation when he reaches 8kg's. His parents don't have medical air or the means .... 

 

Click here to help Mark Schmid - DONATION

 

Original offer:  

Hi Dianne
 
Our daughter, Sadie, was firstly born with a unilateral cleft lip, but with today’s amazing surgery, it was fixed beautifully. When she was born, she also had one of her eyelids partially still joined, which had to be cut open.

 
When she was about one she was diagnosed with Ectodermal Dysplasia based on all the signs of the syndrome.  It was later suspected that it was a version called Haywell’s syndrome. That again is a congenital condition, but she had it mildly. In severe cases, children have no eyebrows, eyelashes, very poor quality and quantity of hair, poor quality of nails, low set and protruding ears, the teeth grow out “pointy” and they have underdeveloped sweat glands, which means that body temperature regulation is affected. Therefore, fevers can be dangerous and extreme cardiovascular sport needs to be avoided. So Sadie had very delicate hair, a few pointy teeth, low set and slightly protruding ears and slightly underdeveloped sweat glands, but enough that she got hot easily!!

 
In mid-November 2013 she suffered with an extreme viral infection, with fevers in the region of 40 degrees for 3 solid days.  In mid-December, she was diagnosed with dilated cardiomyopathy. That is weak heart muscles and an enlarged heart, and in layman’s terms “heart muscle disease”. The cardiologist could not say whether it was the virus that had attacked her heart causing this, or whether it was congenital, but was planning on doing an angiogram to exclude any physical defect, which could be corrected surgically. She however never had the opportunity to have the procedure done as this was booked for the 25th of June.  From December to mid-June this year, her condition was treated with chronic medication. Her cardiologist was satisfied with her heart remaining at least stable.

 
Early in June this year, she picked up an infection which was treated with antibiotics, however, towards the middle of June, we were not comfortable with her condition, and she was admitted to hospital on the 13th of June.  Essentially she was being treated for pneumonia or some form of infection in the lungs, however the infection had put her into cardiac failure.  She had what we didn’t know at the time was probably a cardiac cough which could explain why the infection took time to be picked up, and this was because in fact she was in mild cardiac failure. We actually, in retrospect, realize she was probably in this condition for quite a while prior to this, but she obviously “managed” as she was a real fighter. The onset of infection just escalated her failure and she clearly had a weakened immunity so could not fight the infection. While in hospital, the doctors struggled to identify the infection that they were treating, and also with the Ectodermal Dysplasia, her fevers were difficult to manage too. We were very hopeful that she would pull through, but the infection levels, as well as the balance of all treatment for the cardiac failure to ensure normal heart rhythm ultimately became too much for her and the cardiac failure worsened, until after 27 days in hospital and under the most brilliant care, she passed away on the 10th of July.

 
Through research, it has come to our attention that she is now the 4th reported case worldwide, where with combined Ectodermal Dysplasia and Cardiomyopathy, has lead to death in childhood. So this appears to be a very rare, but clearly deadly combination.

 
Sadie was 3 years, 9 months old when she passed away. She was a very special, feisty, fearless, passionate and intelligent little soul and is so dearly missed. I have included a collage of pictures of her that Russell’s sister put together in her memory to give you a picture of our little princess.

 
 
The time that we spent at the hospitals (as she was transferred from Sandton Clinic to the cardiac facility at Sunninghill hospital after 10 days at Sandton when she was more stable) as well as the complete emotional roller coaster during this time with the most incredible parents that were going through even tougher times than we were, as many of these children were surgical patients, and were therefore often in worse conditions than Sadie was, taught us a lot. We are fortunate enough to have medical aid that enabled us to ensure the best care for Sadie, although ultimately, this was not enough for her weakened heart and body, we would like to do something in her memory, and would like to make a donation to a case for someone less privileged and that requires the monetary support for medical treatment, as we saw so many of these cases during out visits to the hospital.

 
Ideally, we would like to support a case that meets similar features to Sadie, so something along the lines of someone requiring heart surgery or something to do with cardiac care.  Please could you assist us in finding the right cause for our donation.   

 
If at all possible it would be great to do this around the 14th of October (Sadie’s birthday) but I will leave that to you to sort out.
 
I look forward to hearing back from you on this.
 
Regards
Cita and Russell

 
Original request:

Hey, my name is Jenny.

I found out on 19 September that my baby boy has to go for a PDA heart operation. He was born prematurely on 33 weeks. Mark is 11-months old. I had a very difficult time during my pregnancy and we did everything possible to come as close to full term as possible. My baby has to get the operation when he’s at 8kg. He now weighs 7,6kg.  He is the joy of my life. He’s the most wonderful baby boy any one can ask for. He has been through so much and he’s still a little fighter. The operation will cost between R200 000.00 and R250 000.00 and we do not have a medical aid any more as we when through a very tough time the past 10 months.  If you can please help use find donations or have any idea of events we can plan to gather the money will you please be so kind and to let me know.