A baby girl who ‘never stops smiling’ is living with a rare skin condition that makes her skin crack

Those nine months a mom carries her baby are filled with joy, anticipation, and a dose of uncertainty. What the new parents hope for is their bundle of joy to be healthy. Sadly, that is not always the case.

Jennie Wilklow, from Highland, New York, couldn’t wait to meet her daughter. She and her husband were over the moon to hold her in their arms. All the ultrasounds and doctor’s appointment suggested the baby was healthy, so they were eased and never thought sweet Anna would be born with a condition that would change all of their lives forever.

Jennie delivered Anna via C-section at 34 weeks. Doctors told her she looked beautiful and that was all Jennie needed to hear at that point.

Shortly after, the proud mom heard her daughter cry, and that was just another sign that everything was right with her little jewel.

When her husband visited Jennie, he was strangely silent and looked worried and puzzled.

“My husband’s silence scared me; he just sat in shock as the doctor left, and I prodded for more info,” Jennie shared with Cafe Mom.

“He just kept saying, ‘It’s bad.’ What does that even mean? I thought in my head. He told me, ‘Jennie, I looked in her eyes, and she has the most beautiful soul.’”

Anna was diagnosed with harlequin ichthyosis, a rare condition that causes thick diamond-shaped plates that are separated by deep cracks. “As they tried frantically to help her, her skin hardened within seconds (of birth). After hardening, it began to split, causing open wounds all over her body,” Jennie told Cafe Mom.

\

Although doctors weren’t sure she would survive, Anna beat the odds and is thriving. “She was beauty in the purest form,” her mom said.

There isn’t cure, and the treatment is quite demanding as it requires constant baths and keeping the skin as much moisturized as possible. “Every couple of hours I covered her with Vaseline and bathed her for many hours of the day. I had dreamed for years about the things my baby would wear, and though it seemed so trivial, it was what I struggled with most,” Jennie said.

In an attempt to raise awareness about this condition, Jennie posts photos of Anna on her Instagram page harlequindiva. She opens up about the everyday struggles and what it is like to have a child with harlequin ichthyosis.

“Anna captured everyone’s hearts because she is the purest form of perfection. Doing the work every day is simple when I’m doing it for her, and with every new accomplishment, the world celebrates with me,” Jennie told Cafe Mom.

She adds, “I now understand that I was given her because of the love I already carried in my heart for my daughter. Anna was meant for me, and I for her, and together we will show the world what true beauty is.”

25 Years Later They Laugh At Critics Who Said Marriage Wouldn’t Last

There are many people who get married despite the fact that critics may doubt their ability to stay married for the long term. This often happens when we get married quickly or perhaps we are young and people don’t think we are yet responsible enough for the bond.

In 1995, there was a young couple who also were doubted but they ended up getting married and they stayed married for 25 years. They also were the first couple with Down syndrome in the UK to become husband and wife.

These days, we hear about people who have Down syndrome getting married on a regular basis. At that time, however, it was unheard of and it was the first time in the world that a couple with Down syndrome said I do.

Just like any other disability, however, those with Down syndrome have the ability to beat the odds, and certainly, that is what Tommy and Maryanne Pilling did. In fact, they are an inspiration to many who wonder if they have what it takes.

Maryanne was born in 1971. Her mother, Linda Martin, provided her with a loving atmosphere at home and she also had a sister who loved her as well. There were still times, however, when she struggled in life and she was even rejected by her father.

Since she was raised in a loving household, however, she grew up to be a very loving woman. It was easy to see in her lively personality.

Tommy was born in 1958 and was an only child. When he was 12 years old, he became an orphan and he grew up in a care home in Essex. He did have delayed development because of a lack of a support system, and he didn’t care much for his physical appearance.

When the two of them met in 1990, they were working in a kitchen in a training home for disabled individuals. He was 32 and she was 19 at the time.

It was easy to see how Maryanne felt about Tommy because she would absolutely light up when she spoke about him. They shared a number of common interests, such as music, cooking, movies, and doing craftwork.

Tommy also loved Elvis Pressley and the two of them would dance together on a regular basis. He would also let her know how much he loved her, and eventually, the family got accustomed to having him around.

18 months after they started dating, he proposed to her and asked her mother for permission to marry her daughter. The mother didn’t hesitate, she gave her blessings right away.

Other people, however, were not quite so positive about the idea of the two of them getting married. Some said that she wasn’t ready for it and some even asked about their sex life.

Despite the fact that they were criticized openly, they got married in 1995. 250 people came to the wedding, which was a fairytale for them.

They lived together with her family for seven years before moving into their own apartment next door. Her sister also moved along with them.

They have a very strong bond because he listens carefully when she speaks. There is never any type of hidden agenda and they love each other with their whole hearts.

Unfortunately, Tommy was hospitalized in 2020 after he was diagnosed with Alzheimer’s and then got COVID. Due to his declining health, he passed away. That was on January 1, 2021.

When the news was broken to her, she seemed to understand but still was a little confused about the situation. We are just glad that they had almost 30 years together, and they loved each other till the end.

Related Posts

Be the first to comment

Leave a Reply

Your email address will not be published.


*