Help Joy survive sickle cell

 Dear donors,

Thanks to your support, we have secured the budget for another year of support for these two families affected by sickle cell anemia. Thank you for being there for them. 

For this report, we bring you a message from Henry, the father of Stephan and Rejoice. We have transcribed his message and translated it as directly as possible. 

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From the Father of Rejoice and Stephan, no grace to your evildoer.* The children are doing much better, and we had fewer challenges these months, although we still have crises.

Stephan is often having pain in different parts of his body. Maybe it starts as leg pain, but it keeps shifting. By the time we get to the hospital, it has moved from leg to hand, from hand to back, and so on.

Rejoice is going to school. She is in Form 1 and doing much better. With friends, she feels free. Not everyone is aware of the condition we are living with. Her eyes are always a bit yellow, despite the fact that she drinks a lot of water, as the doctors tell her, but the eyes stay like that. 

Stephan is an apprentice and he is learning to be a technician. He goes to work every day that he feels fine. His boss appreciates him. They never have a problem with him. 

That's all I can say for now. Thank you.

 * This expression is a common blessing that can be translated freely as "may you stay free from all harm / may no negative plan against you succeed".

A Note on Previous Reports

I would like to apologize for inconsistent spelling of Queeneva's name in previous reports. Additionally, an editing error caused some captions to be matched with the wrong photos, creating confusion between Queeneva and Joy. To clarify: Queeneva is the older sister. The photo in the previous report was an older picture of Joy; at the time, we did not want to share a recent picture as she had just been hospitalized. I have included current pictures of both of them in this report to clear up any confusion.

Reporting Period: September – November

Thank you for your generous donations so far. We wish you a merry christmas and we trust you will receive as much hope, trust, and safety as you have brought into the life of Joy and Queeneva.

We will not sugarcoat it. The last months have been tough. Sickle cell is a very dangerous and volatile condition. Despite consistent medication access and some improvement in living conditions, there were severe crises in November and October. Joy had the most severe crises and had to spend more than a week in the hospital.

Here an update on their condition from our partner the Community Association for Vulnerable Persons:

Period - September to November

1. Beneficiary: Joy

Crisis Episodes Frequency: Almost every week

Severity: Moderate

Hospital Visits due to : Nose bleeding, body pains, body weakness

Duration of hospital stay: almost a week

New Symptoms:

Leg pain (newly observed symptom noted during the period)

Weight: Normal

Hemoglobin levels: 50% 

Weight / Hemoglobin Levels: half of levels for girls this age. 10% lower than other girls this age with sickle cell.

2. Beneficiary: Queentiva

Crisis Episodes Frequency: Almost every week

Severity: Mild to Moderate.

Reason for Hospital Visits: Body pains and weakness related to sickle cell crises. Not hospitalized.

New Symptoms: neck pain.

Weight: normal according to age.

Hemoglobin: lower than girls this age but within expected range for girls with sickle cell (lower end)

Azah Queentiva did not have any hospitalization in this period. She relates well with friends and is socially active at school. A good highlight during this period was that she maintained a positive attitude and strong peer relationships despite ongoing health struggles.

Please note that despite their challenges, your support made a difference. Without the monthly economic transfers, Joy would not have received the same medical treatment in the hospital, and Queeneva’s situation may have been as bad as Joy’s, had she not been receiving preventive treatment. The feeding of both girls is normal as their weight shows, if they were underfed their situation would be much worse.

In this report we will only share a picture of Queenva while waiting for Joy to recover more. Next report we will share information about Stephan and Rejoice.