Normal is a relative word. When we think of the word ‘normal’, it is usually in terms of what is normal for us, for our family. My normal is not your normal.
Years previously, a grandfather struggles throughout his life in the 1950s and ’60s with hemophilia, but back in his day, before the more advanced medicine we have today, he went through blood transfusions each time he suffered an injury. He wasn’t expected to live very long but years later, he defies the doctors’ prognosis, he marries and has children of his own - he becomes the proud father of Brooke.
Hemophilia is a genetic disorder where your blood is unable to clot because you are missing one important protein or factor in your blood. It affects the males in a family line, but females can be carriers. Hemophilia symptoms include severe external and internal bleeding. It’s the internal bleeding that is especially concerning and each time an injury occurs, the internal bleed puts pressure on internal organs and causes joint deterioration which can sometimes lead to amputation. These internal bleeds are extremely painful with harmful long-term effects. Brooke’s father can attest to that after the loss of his leg.
Fast forward to 2011 when Robbie and Brooke Caesar become the very proud parents of Mason, their firstborn son. Mason’s birth represented the paradox of profound happiness in gaining a beautiful baby boy, and a fear that a genetic disorder would be found in his blood.
The day after Mason was born, his blood was tested and it came back positive for hemophilia, even worse, was that it was the most severe form of hemophilia. They were devastated, they knew there was a 50/50 chance but there are so many factors involved: genetics, some are carriers, some are not, it’s like a lottery, and you just don’t know who, when or how. You take it as it comes. You can’t live in fear.
Robbie and Brooke knew that this was going to alter their little boy's life forever and they needed to make special preparations for his future and their peace of mind. So they prepared and began to look for pitfalls around the house that could put Mason in grave danger. Robbie saw their stone fireplace as a threat and immediately covered it with foam and that’s the way it stayed until Mason was stable on his feet.
As an eight-month-old baby, Mason received his first bout of medication after playing with a plastic coat hanger. He put it in his mouth as babies do; he turned it, prying his mouth open. It didn’t cut him but it did cause a small sore in his mouth. Over the next few days, the sucking motion of this bottle and pacifier eventually caused a bleed in his mouth. His tongue became so swollen it was sticking out of his mouth and he had to be taken to hospital.
The first four years of Masons’ life were wrought with the stress of trying to give injections to a crying, squirming baby boy with a needle phobia. It tore at his parents’ hearts every time he needed his life-saving medication. Even though they had support, it was beyond difficult knowing that in order to heal Mason, they had to inflict an injury. After four years, Robbie says, “We threw up a white flag and couldn’t do the injections anymore”, so at the age of 4, Mason was given a port that was inserted just under his skin. This gave him time to get over his needle phobia and allowed Brooke and Robbie to get comfortable with administering the meds. It also gave the family the confidence to travel, which up until then had been almost impossible.
Mason (10) has learned to inject and medicate himself
Fast forward to today …
Robbie and Brooke have finally removed the foam from the fireplace and Mason exclaimed: “There’s rock back there?!” – A testament to a family who has done everything they can to protect their child wherever they have it in their power. In their words, you cannot wrap your child in cotton wool, in fact, in the hemophilia community, it is discouraged as it not only affects the children physically but psychologically. They need to learn to live and thrive in society.
In thinking back, they realize they only learned what it meant to have a “normal” child after their daughter Harper was born. Mason’s umbilical cord took two weeks to fall off, Harpers took four days. As a baby, Harper teethed normally, whereas Mason’s teething caused severe bleeds.
A brave brother and a supportive sister
Medicine has moved on in leaps and bounds creating a very different life for Mason compared to his Grandfathers. Mason is given medicine proactively because of the severity of his condition. A normal factor level is between 100 and 150%, Mason’s is less than 1% which means he is on medication for the rest of his life, and it’s not just a quick injection – it’s a 10-minute preparation and sit down where he is given his meds intravenously, this helps him to live normally for 2 days. Then he needs more. Every vial of medication is extremely expensive and not readily available. Even through all of this, Robbie and Brooke have learned not to hover over Mason, but to allow him to guide them as to how he’s feeling.
Robbie has prepared the family in advance for anything that could happen by placing Surviveware first aid kits in each of their vehicles. He was so impressed with the organization of the kits - He says: “We’re both very organized neat freaks…” Brooke interrupts with “he gave me a label maker for Valentine’s day one year” … Robbie enthuses “it’s just beautiful, when you see this kit, you’re thinking, hopefully I don’t ever need this, but if I ever did, you just open it up and see a listing of everything that’s there and it’s all high-quality supplies and it’s just beautiful. Brooke says: He got the kit and opened it up at the kitchen table and he was like “Brooke! Look at this thing! This is the most amazing first aid kit I’ve ever seen!
The Surviveware Large First Aid Kit has extra space where Robbie has added:
- A tourniquet provided by Surviveware
- A Nose bleed clip
- 1 additional instant ice pack
Robbie says further “When I saw the kit, I decided to buy more kits for each car – whether we’re hiking or at Taekwondo (Mason does non-contact Taekwondo) or even when Harper plays soccer or … I saw a heat blanket in there - if we get stranded and it’s cold… it’s just nice to have those supplies in your car, you’re more prepared than otherwise.”
What would you want to say to others?
Brooke replies: “It’s really important to find support. Find other people who have a similar disorder, have conversations and learn from each other. The more we learn the better the chances of a healthy, active lifestyle. Try to live as normal a life as possible. When people hear ‘blood disorder' they think, that’s it, the kid won’t live long, no normal life – it’s not like that anymore.”
This family has learned to pull together. They make decisions together, the children know the story, it’s all out in the open, it's practical, it’s honest, it’s caring, it’s loving.
Robbie and Brooke are part of the Hemophilia of Georgia Community. This is their pharmacy, it’s where they find support, camps for Mason, and nurses that come to the house to help.
Do you have a story where a Surviveware kit or product has helped you or others? Send your story to firstname.lastname@example.org